Why do you share your story?

-Sharing your story isn_t easy. But it is powerful. It has the power to change perceptions, encourage understanding and provide hope to others. - See more at-There are so many mental health advocates out there who share their stories about their mental health experiences in an effort to help end the stigma that is still so often attached to mental health issues. I would like to thank these people for opening up and sharing their personal experiences, which can sometimes be a scary and intimidating thing to do. Thank you to everybody who is working to promote awareness and understanding– you are doing very important work!

Why do you share your story?

I recently asked our Twitter, Facebook, and Instagram followers why they share their story. If you would like to share your reason for sharing your story, feel free to do so in the comments!

share1share2share3share4share5

Posted in stigma | Tagged , , , , , , , , | 1 Comment

Mind & Body: Type 1 Diabetes and Mental Health

Mind2When you think about the term “health,” what first comes to mind? Physical health? Mental health? Many people place more of an emphasis on physical health, but mental health is just as important. In fact, mind and body are more connected than you might think! Many physical illnesses can increase your risk for certain mental health issues. This post will focus on Type 1 diabetes (T1D) and the effect that it can have on mental health.

What is type 1 diabetes?

According to Beyond Type 1, it is “a chronic, autoimmune condition that occurs when the body’s own immune system attacks the insulin-producing beta cells of the pancreas. This attack leaves the pancreas with little or no ability to produce insulin, a hormone that regulates blood sugar. Without insulin, sugar stays in the blood and can cause serious damage to organ systems, causing people to experience Diabetic ketoacidosis (DKA).”

People living with T1D must monitor their blood sugar levels and calculate their insulin doses according to their food intake, stress levels, illness, and other factors. Beyond Type 1 notes that “these calculations are rarely perfect resulting in a tremendous emotional and mental burden for both patient and caregivers.”

The cause of T1D is unknown, but studies have shown that it results from a genetic predisposition and an environmental trigger. It can not be prevented or cured.

How does this relate to mental health?

T1D

Stress is something that everybody experiences at some point during their life, but it can be very harmful to someone with T1D. Beyond Type 1 explains what happens when you get stressed:

Essentially, when the body senses a threat — perceived or actual — it has a physical reaction by releasing the stress hormones of epinephrine (commonly known as adrenaline) and cortisol (also known as the fat-layering hormone). These hormones trigger the liver to produce extra energy called glucose that your cells can then use to fight the threat (super-hero-style) or flee the scene (a.k.a. Road-Runner-exit).

This can be dangerous for someone with T1D because without insulin, the extra glucose energy piles up in their blood and can not reach the cells that it’s supposed to reach; this is called hyperglycemia. People who have T1D need to make sure to be aware of their stress levels in order to avoid any further complications.

Another mental health issue that people with T1D need to be aware of is depression. According to Beyond Type 1, if you have diabetes your risk of developing depression could be up to four times more likely. Mental health and physical health are intertwined, and someone who has T1D and becomes depressed may not manage their diabetes as well as they should, which can lead to complications.

Women with T1D have about two and a half times the chance of developing an eating disorder than someone without T1D. According to We Are Diabetes, the term “diabulimia” has been used (as well as ED-DMT1) for when insulin is withheld in order to manipulate or lose weight.

For more information about type 1 diabetes and its impact on mental health, visit Beyond Type 1’s website.

 

 

 

 

Posted in Educational, mind & body | Tagged , , , , , , , | Leave a comment

Depression: Warning Signs & Symptoms

I decided to write a post about depression because it is one of the most common mental disorders in the US. According to the Anxiety and Depression Association of America, 3 to 5 percent of adults are dealing with major depression at any point in time. Here’s what else the ADAA says about depression:

Depression is a condition in which a person feels discouraged, sad, hopeless, unmotivated, or disinterested in life in general. When these feelings last for a short period of time, it may be a case of “the blues.”

But when such feelings last for more than two weeks and when the feelings interfere with daily activities such as taking care of family, spending time with friends, or going to work or school, it’s likely a major depressive episode. Major depression is a treatable illness that affects the way a person thinks, feels, behaves, and functions.

Active Minds has a list of depression warning signs to look out for in yourself and in others:

  • Loss of interest in activities they once enjoyed
  • Resistance to hanging out with friends; isolating
  • Pronounced sadness or expressions of a bleak outlook
  • Significant, usually quick weight loss or gain
  • Noticeable change in sleeping patters; sleeping all day or not at all
  • Excessive apologizing, even when they are not at fault
  • Distracted; inability to read or finish assignments

Beyondblue has put the symptoms into four categories– behavior, feelings, thoughts, and physical:

Behavior

  • not going out anymore
  • not getting things done at work/school
  • withdrawing from close family and friends
  • relying on alcohol and sedatives
  • not doing usual enjoyable activities
  • unable to concentrate

Feelings

  • overwhelmed
  • guilty
  • irritable
  • frustrated
  • lacking in confidence
  • unhappy
  • indecisive
  • disappointed
  • miserable
  • sad

Thoughts

  • “I’m a failure.”
  • “It’s my fault.”
  • “Nothing good ever happens to me.”
  • “I’m worthless.”
  • “Life’s not worth living.”
  • “People would be better off without me.”

Physical

  • tired all the time
  • sick and run down
  • headaches and muscle pains
  • churning gut
  • sleep problems
  • loss or change of appetite
  • significant weight loss or gain

I would like to note that while many pictures depict depression to look like this…

depression1…you can’t always tell that someone is depressed just by looking at them. This could also be the face of someone with depression:depression2

The Anxiety and Depression Association of America has a depression screening questionnaire on their website as well as a “Find a Therapist” link. If you think that you  may be depressed you can fill out the questionnaire, print it out, and then bring it to your therapist.

Posted in Educational, YouTube Videos | Tagged , , | Leave a comment

Excerpt from “Unpacked Sparkle” by Patrick A. Roland

bookExcerpt from Unpacked Sparkle by Patrick A. Roland

Chapter 26 – Royals

So began six days of being locked up in a mostly padded room in a long hallway of corridors that led nowhere, except to the center of the beauty I had finally begun to see in myself. In this place, I began to see myself as I really was; amazingly awesome. The majority of the people I shared this time with were homeless, and some were even far more gone than I. Also, I finally got the diagnosis I needed to set myself free from the bondage of addiction.

After being awake for four days, I finally passed out once I got there. When I awoke and got my bearings, I realized the enormity of my situation. I was locked up against my will. I fell to the ground in wails and sobs. This can’t be happening to me, I thought, crying harder and banging my fists against the counter of the nurses’ station. It also should be noted that I again didn’t have shoes on and I was wearing one of those awful hospital gowns backward for a full two days. None of the orderlies would heed my request for actual clothes. They had even taken my hilarious Mariah t-shirt and sparkly shoes away! Maybe it was a test to see if my anxiety would spiral so they could keep me there longer.

That first day and a half I was still somewhat tired; exhausted actually. I was wary and flushed in the still dazed and confused fog from all the drugs and alcohol I had consumed for four solid days before being forced to stay in this awful holding cell. I wished I had just jumped out that window. My new reality was jarring. There were people talking to themselves, loudly! I surely wasn’t this bad, this bat-shit crazy, was I?

Yes, I was.

On the second full day, things began to change. I was taken to a different unit where the crazy was more high functioning and bright. I was finally among my people! It was there that I was ushered into a tiny room where for the first time a doctor, a swarthy, jubilant Middle Eastern man much like Nali, looked me in the eye, and not away from me. All the previous doctors in places like this had looked away, because I was crazy and not worth humanly acknowledging. But this man said exactly what I needed to hear to finally save me from myself. This kind-looking and calm man made me feel safe and cared for in the brutally honest moment of the diagnosis he was about to give me. I was crazy, with papers to prove it!

“Has anyone ever told you, you’re bi-polar?” he asked.

Suddenly everything made sense. Every single thing! The dramatic highs and the crushing lows; the sum total of all my experiences thus far. Now that I knew what I was dealing with, really and amazingly dealing with, I knew I could and would never use drugs or drink alcohol again. This revelation finally and totally opened me up to a life worth living and to all its beautiful potential and possibility. After all, the crazy thoughts in my head are already manic and overwhelming enough. Adding chemicals to them only makes them worse, more heightened, and completely unmanageable.

Alcohol had played a major role in this final experience. I was able to admit that I was an alcoholic, something I had not been able to do before, even when I voluntarily went to rehab two times prior. Both times I knew drugs were my ultimate demise, but I had never fully admitted that alcohol was a problem too. The first half of my thirties were marked by nightly binge-drinking that almost always resulted in blackouts before I found drugs and really messed up everything I had going for me.

I had enjoyed many lengthy days in a row of what I labeled real sobriety. Yet that one, or maybe the second glass of wine at happy hour was always the back door in which I backslid into drug use. First with pot, because I was drinking and I was fine! But then with meth. I knew now I had to stop this vicious cycle with which I was ruining my life, because I actually wanted to live!

So I stood in my truth, rolled around in it, let the bitch marinate, and decided to accept it. I was a gay bi-polar, alcoholic drug-addicted widow, and I was never prouder or more sure of myself. I actually found myself in this sanitarium humming along to the lyrics of the very song in which I first experienced love when I was eleven, “The Greatest Love of All.” For the first time ever, I was taking on the very self-loving and self-motivating words to own and live by. I found myself in love.

With my new diagnosis opening me up to a new kind of self-revelation and ultimate truth, I found myself thriving in this hospital. I was social, I was smart, I was open, I was artsy, I was athletic, and I was capable. I was all these things and more, and I had forgotten all of these very true facts about myself in that long spiral of grief that had caused my very undoing. In that negative space, I had neglected all of the things he had loved about me, all the things he made me realize I loved about myself, and all the things I had loved while he was alive. Only now I knew I had to make it through the wilderness alone. For I was really, wholly, and newly like a virgin and I was ready to take on life with a new sense of passion and purpose like I never had before.

Of my newfound strength, I have told people that even though I didn’t jump out of that Vegas casino window, I did finally learn to fly. I found life in the act of trying to end it. All the bad things that had plagued and ultimately ruined me had also left me that very night in that life-changing hotel room. My mom had finally stepped up and loved me enough to call me on my bullshit and ultimately make me call myself on my own bullshit and finally man-up and really and completely live.

By live, I mean do everything that a person like me needs to do to survive. Get a sponsor. Go to meetings. Do charity and service work. Write it out. Help others. Actually take care of my parents, which I can do now because I can take care of myself! Thrive at work. Make friends. Get over resentments. Solve problems. Take classes. Grow and mature. I finally grew up, no longer that scared, broken little boy that all those things happened to. Now I was the one who made things happen, and I do.

I want to say for the record, that none of this would be possible without the love, encouragement, and support of the people I shared those six days with. Beautifully broken people just like myself who are heroes to me. “Royals” if you will. No matter where this new lease on life, this new journey takes me, I’ll never forget any of those beautiful people whose faces were like mirrors. I was finally and ultimately able to see my beautiful reflection in them. You have my word that I’m going to keep fighting, for me, for us, and for all the beautifully broken people who haven’t found their way yet.

Not only am I in your corner and on your side, I’m on your team.

 

Published by:
Az Publishing Services, LLC

Mesa, AZ 85203
http://www.azpublishingservices.com

First edition copyright: c2016, Patrick A. Roland

All rights reserved. No part of this book my be reproduced or transmitted in any form or by any means, electronic,

or mechanical, including photocopying, recording, or by any information storage or retrieval system, without written permission of the author.

Printed and distributed in coordinated with:
Az Publishing Services, LLC

Mesa, Arizona 85203
http://www.azpublishingservices.com

ISBN: 978-1-944826-32-1

Printed in the United States of America

Cover Design by Mark Greenawalt

This file Generated by WeaversOfDreams.com

Posted in Guest Post | Tagged , , , , , , , | Leave a comment

Mental Health Support Groups & How to Start Your Own

Recreation and mental health. We all know that becoming active in the community is important in improving our mental health. But what happens when you feel too depressed to get out to see existing friends and networks? What happens even if you have no strong friendships and networks to begin with? Have you ever considered starting your own network?

After battling my own mental health, which included a diagnosis of bi-polar disorder and a suicide attempt, it took me five years to reach a point where I felt I recovered from my worst battles. However, despite the many friends and networks I made in this period through following my passions of photography, Motorsport, tennis, cycling, and volunteering, I still had an idea to create a network for mental health people to join together and battle their illness together. The idea I had was this group was to be proactive. Rather just sitting and talking about the issues we faced I wanted to be doing something recreational just as a matter of distraction and as an enabler to encourage us to grow and develop further as people.

In June 2016 I did just that and founded the Perth Active Depression Support Group. It’s a clunky name I admit, but I wanted to promote being active and being about mental health, hence why I went for the long name. The group started on meetup and before my first event, which was 10 days after I established myself on Meetup, I had 100 members sign up. I’ve grown the group to just under 600 member members in 8 months and now host a variety of meetups across the Perth community. I now have a team of volunteer interns that help me to grow and run more events, and I’m in the process of incorporating the group as a not for profit organisation.

The purpose of this guest blog post is to outline how I grew this group so quickly and to inspire you to do the same if you have a similar passion like me to improve your, and other peoples, mental health. It’s hard to keep this concise as there is a lot to pass on, but if you feel like you want to reach out to me for tips I encourage you to email me on perthadsg@icloud.com or get in touch on social media.

1Utilise the resources you have available to get started

There are many resources you can start to establish your group that are available now for use. It costs nothing to establish a Facebook page or an account on Instagram, Twitter, and other various social media. Learning to market your group is going to be a critical issue in developing the following for a group.

One clever tip I learned was to repackage Instagram posts into my own unique style. There are hundreds of motivational and mental health accounts on Instagram and they provide plenty of material you can use for your own account. Rather than re-posting their posts (which is stealing in my opinion), what I do is copy the quotes they post, which are often generic and not attributable to a person, and mix them into my own photos. I have learned to use apps like Adobe Spark (free) and other word art photo apps to make unique looking graphics with textures and imagery that are eye catching. It’s the equivalent of music artists sampling old artist’s songs and turning them into a new style.

One paid network that you should tap into however is Meetup. Meetup is the basis of my group and one of the best ways to find new members and manage RSVPs as they have optimised their search engine results to be found at top of google rankings when you search for support groups online. It’s more effective than Facebook events and doesn’t cost too much (I pay $15 AUD per month) to run.

 2Tap into existing community resources

Once you have your meetup group running and have done some marketing on social media, the next step is to spread the word in the community. While social media is great, there is simply no substitute for in-person networking. Local government councils and entrepreneurial co-working spaces are a great source of meeting people to take your idea to the next level.

One of the greatest resources I tapped into for my group was a local Neighbourhood Soup event, which is a community dinner where people pay $10 for soup & bread and get to hear three great community projects pitch their ideas on how to improve the community. I won the soup event, which gave me $890 to purchase a bunch of board games to run a monthly board games night for the group. Yes, the money was incredible, but what was even better were the people I connected to that evening. I met people from the local council as well as local businesses and other significant people in the community that helped me to grow my project. No amount of money could substitute that good will.

After pitching at the soup event I connected with other like-minded organisations that could assist my cause. Some of the examples included Act Belong Commit, an advertising campaign promoting mental health in Western Australia, the Consumers of Mental Health WA, a mental health advocacy body, and Connect Groups WA, a support group with the purpose of helping develop other support groups. I hope you as a reader have access to resources like this in your local community. If you do, take action to connect with them in person.

3Link in with other mental health services

 One thing I have come to learn about the mental health sector is that amongst organisations that are all competing for funding, there is a great sense of cooperation amongst groups. Since starting my group I have met with many players in the industry that are interested in the ideas I have and telling their client bases about what we are doing. Linking in with established mental health providers, particularly ones that are tied to servicing clients on an individual basis, will help to grow your cause and provide a basis of clients you need to sustain activities.

 

Be patient4

Take your time to develop your group. When I started I didn’t have an idea of where I would run it in terms of geographical area. When I won the Soup event, I decided to base the activities in the local area that the Soup serviced. This was in part due to the connections I made on that night, and this area is very central in Perth, catering to people living both in the north and the south. As I now have a base that I can rely upon, I can look to spreading the activities to other areas in the Perth community, but this too will take time. You can’t service everyone at the start, but if you grow with careful planning and good people around you, there is an ability to spread your cause.

 

5Keep persisting

There will be a few bumps that you will feel when starting your group. If your group is predominantly online based to start like mine was, you will notice this straight away. One problem I had was people would RSVP and not show up. This was down to many reasons, from people forgetting about their RSVP to people being too affected by their mental health to come. Don’t take this personally. Instead, keep informing, persuading and reminding people of what you are trying to achieve. You will have some fantastic experiences on some days, quiet moments on others. Just don’t give up at the start.

 

Be creative6

The final tip: do things you are interested in. If you like swimming in a pool, host a meetup at a public pool.  If you like walks, take people for a walk. If you like board games, host a board games night. Your passion will show in the meetups you do. I recommend doing a mix of recurring and non-recurring meetups for your members to provide a mix of consistency and reliability respectively.

 

Conclusion

Well, I hope I inspire you to create a group like mine in your local neighbourhood. It’s a very entrepreneurial thing to do and such a rewarding experience. Below are links to my groups social media. If you ever feel like getting in touch, please email me at perthadsg@icloud.com or on the social media links below.

Meetup
Facebook
Instagram
Twitter

About the author

Rahul Seth is a qualified member of Chartered Accountants Australia and New Zealand, but has recently switched career paths from working as an accountant into working in the mental health industry. A long-standing volunteer with TEDxPerth, Rahul enjoys Formula 1, tennis, cycling and photography. Rahul is the founder of the Perth Active Depression Support Group, a group he founded that now has a member base of 600 people in 8 months, that promotes and runs various recreational activities to improve the mental health of its members.

Posted in Educational, Guest Post | Tagged , , , , , , , , , , , , , , | Leave a comment

Pets as Mental Health Support

I recently posted an article on End The Stigma’s Facebook page titled “It’s Time to Take Pets Seriously as Mental Health Support,” and I asked some of our community members to post a picture of their pet and to write a little bit about how their pet helps them with their mental health. Here’s what some of them had to say:

1

Hollan: My dog Tucker literally gives me a reason to wake up every morning. Nothing would be worth it without him. He hurts when I hurt and he feels what I feel. He’s stopped me in the middle of injuring myself by laying on top of my arms. He is my full support system.

Debbie: This is Shasta the wonderdog. She is a rescue…but she saves me daily. She goes everywhere with me and follows both voice and hand commands with adoring pleasure. She sleeps with me and lets me know of anyones presence near me or my home. When I work outdoors as a gardener. She picks the highest spot and watches over me…..with her back to me and constantly scouting the area with her careful gaze. I have PTSD and social anxiety and she makes it bearable to go to my support groups….and that also benefits everyone else who meets her. She really is the best.

8Kaitlin: These are my babies. They keep me strong. I got the torbie Ariel (the one in front) specifically as therapy cat. She is amazingly affectionate

3Ann: Without my two beautiful boys, I wouldn’t know how to live. They are the world to me ❤

4Letha: My char char Binks pup. She will come up when she senses I’m hurting and nuzzle me,make me pet her she snuggles me in bed every night and is just a great emotional support all around

5Hannah: My dog, Shiloh does wonders for me. There’s nothing better than a happy dog greeting you at the door after a long night of class. I’m a student clinical mental health counselor and see a lot of value in the emotional support dogs can have for anyone. Whether it be snuggling next to you when you’re down or making you go outside because they want to play fetch. Dogs are invaluable in many ways ❤

6Sam: My dog Bella is my support system, I have depression, anxiety, ASD, DID, OCD, suicidal tendencies and self harming behavior and if I’m having a rough day she never fails to make me smile.

7Audrey: This is Tig. He meets me when I get home and keeps me company as I live alone. He curls up next to me as I do work or crafts reminding me I am not alone. I also have a chronic illness and knows when I don’t feel well. He curls up around my arm and relaxes me till we both sleep.

img_20161211_211851732Lauren: Dexter is the best little buddy that I could ever ask for! He makes me laugh a lot, he keeps me company all the time, and he makes me so happy. Loving him and taking care of him is very beneficial for my mental health, and I don’t know what I’d do without him!

Posted in Uncategorized | Tagged , , , , , , , , , , , , , | 1 Comment

Introspection & Self-Care

5c75235edf52f04764297bfe76154474This past fall I began my first semester of graduate school as a Clinical Mental Health Counseling student. It was a stressful and exhausting semester since I was working part-time and choreographing a high school musical on top of being in school full-time, but I made it through and I now have a better idea of what kind of school/work/theatre/relaxation balance I need in order to be less stressed out.

Part of the work that I did during my first semester involved a lot of self-reflection and getting a deeper understanding of who I am as a person, because this will be important for me to know as a future mental health counselor. Here is what I have learned about myself in the past year or so in regards to taking care of myself mentally:

I am not good at getting things done. I’m most productive in the morning. In order to get errands, homework, etc. done (without waiting until the last minute), I need to start getting it done as soon as I get up in the morning. Otherwise it’s too much of a struggle to find my motivation.

Being around people for a significant period of time drains my energy, and I need more relaxation and recuperation time than most people I know.

Too much rest and relaxation at home will make me feel cooped up. This is especially annoying when I feel cooped up but am also lacking the motivation to do anything else. Having some kind of structure in my day can be very good for me and make me feel more mentally balanced.

It can be difficult for me to calm myself down when I’m having an anxiety attack. I’ve learned the importance of having somebody in my life who is willing to help me calm down during these times. My boyfriend is amazing when I’m experiencing anxiety at any level, and even though he may not understand it, he handles it in the best way possible. I’ve never had anybody in my life who helps my anxiety like this before, and I feel very lucky.

At this point in my life, I have been recovered from depression (and significant anxiety) for the same amount of time that I had struggled with it. However, I still have moments from time to time in which I experience overwhelming anxiety, and a few days a year I find that I’m having what I call a “sad day,” which is where I feel down and like I’m going to cry for no reason. On these days I need to be especially gentle with myself. It can be very frustrating to feel that way out of the blue, but I now know how to take care of myself. On these days I don’t push  myself. I let myself rest and try to maintain positive self-talk, no matter how frustrated I may be with myself.

I think it’s important to try to understand yourself and how your mind and body react to certain stressors in life in order to be able to effectively self-care, especially if you are living with a mental illness. While having a deeper understanding of myself will help me professionally one day, it also helps me on a day to day basis. Take a moment to get to know yourself.

Posted in My Story | Tagged , , , , , | Leave a comment

My Culture & Stigma

The following is an excerpt from a paper that I wrote for graduate school titled “My Cultural Background.”

One aspect of our culture that sadly still exists is the stigma of mental illness. I suffered from depression and anxiety my junior and senior year of high school (and several years after), and I noticed that the way that some people treated me changed once I told them my diagnosis. I even lost friends because of it; I don’t think they knew what to do or say around me anymore. According to a study done regarding mental illness stigma and rejection, “the most stigmatizing mental illnesses appear to be those that people perceive to be dangerous, uncommon, and the sufferer’s own fault” (Feldman & Crandall, 2007). I think it can be easy for people to see depression and anxiety as things that are “the sufferer’s own fault” and to not understand that you can’t just snap out of it. The study also said that “stigma may detrimentally affect mental ill individuals’ self-concepts” (Feldman and Crandall, 2007)” On a similar note, a study that was done about microaggressions and mental illness said that “perceived stigmatization can potentially increase the likelihood of the internalization of stigma, which can in turn impact psychiatric symptom severity and important outcomes such as hope, self-esteem, and empowerment” (Gonzales, Davidoff,  Nadal, & Yanos, 2015). Being treated differently by those few people because of my struggles definitely did not help my self-esteem and even made me feel like there was actually something wrong with me. There were five major themes of microaggressions listed (taken from focus groups involved in the study), and they were “invalidation, assumption of inferiority, fear of mental illness, shaming of mental illness, and second class citizen” (Gonzales et al., 2015). The study noted that one specific type of microaggression was one “in which the experiential reality of persons with mental illness is invalidated, such as when others act as though the person is simply exaggerating obstacles that everyone experiences” (Gonzales et al., 2015). I experienced that type of microaggression several times, and it was extremely frustrating and invalidating. I know that many other people have had experiences similar to mine but even at a higher level because our society sometimes has issues with people who are “different” and who look or behave in ways that differ from the “norm.”

Author: Lauren M.

References

Feldman, D. B., & Crandall, C. S. (2007). DIMENSIONS OF MENTAL ILLNESS

STIGMA: WHAT ABOUT MENTAL ILLNESS CAUSES SOCIAL REJECTION? Journal of Social and Clinical Psychology, 26(2), 137-154. Retrieved from http://nec.gmilcs.org/login?url=http://search.proquest.com/docview/224865525?accountid=42685

Gonzales, L., Davidoff, K. C., Nadal, K. L., & Yanos, P. T. (2015). Microaggressions

experienced by persons with mental illnesses: An exploratory study. PsychiatricRehabilitation Journal, 38(3), 234-241. doi:10.1037/prj0000096

Posted in My Story, stigma | Tagged , , , , , , | Leave a comment

“Unique’s Story…” By Stacey Lehrer

Unique always used to talk about writing a book about her life. She worked on it off and on for years, often telling me about a chapter she was working on or what part she planned to write about next. It’s been years since she had a working computer; I don’t know what happened to her writing. But I do know that she wanted people to hear her story. I can’t speak to what happened in Unique’s life in the time before I knew her, although I’ve heard enough about it that I feel like I have a pretty good idea. But I can tell her story as it connects with mine, in the 14 years since we met. I’m leaving out some of the more intensely personal details, to respect her privacy, but hoping to share her story (and, in part, our story) as she wished.

I met Unique when she was 15, as one of her camp counselors at a camp session for kids with physical disabilities. I didn’t really get to know her that summer – the other girls in her group were outgoing and animated, while she was quiet and withdrawn, and it was easy for her to slip under the radar. After camp I stayed in touch with a few of the other campers via e-mail, and one of them told me that Unique was having a hard time and might like some cheering up. So I just sent a friendly e-mail, asking how things were going. She had a lot going on, mostly just regular high school drama, and we wrote back and forth a few times. This was back in the day of AOL Instant Messenger, and one day out of the blue a message from her popped up – she was at home alone with her grandmother, her grandmother was drunk, and she was scared. That IM conversation turned into talking almost every day, either through IM or e-mail or over the phone. She was lonely, and living in a very difficult situation – I could hear enough in the background of those phone calls to know that she was telling the truth. The next summer, when I had Unique as a camper again, I sat with her while she talked to a police officer about what was happening. She didn’t want to go back home, but there were no other options. She told me that she couldn’t think about it, because then she would start crying…and if she started crying she would never stop. After watching her silently getting in the car to go home, I was walking back to my cabin when the camp nurse stopped me to say that she thought Unique was making it all up because “if things were really that bad at home, she should be happy when she’s at camp and away from it, not sad.” If that happened now I would have given her a lecture on depression; but at that point I just stared at her and walked away.

After that summer, Unique e-mailed and/or called me almost every day. Things were different though…she was extremely depressed, and frequently suicidal. I told her that if she ever needed to talk, she could always call me, no matter what time it was. I sent her a calling card (which I kept adding minutes to for the next 13 years), so she could call me without getting in trouble. I was in college; I would often be on the phone until 2 or 3 AM and then get up in time for my 8:00 classes. I had just gotten my first cell phone, but it didn’t work in my dorm room, so I would sit for hours on the floor by the main door. I had no idea what I was doing, and when I think back to some of the things I said to her during those early days it makes me cringe. She was pretty forgiving though, and we figured it out together. It helped that I was in school for occupational therapy at the time. I read the chapter on depression in my mental health textbook, and realized that it had been written by my thesis advisor…we set up a meeting, and she gave me some great advice. Another time, when Unique’s grandmother stopped giving her her antidepressants because she was on antibiotics, another professor called her psychiatrist husband to ask if there was any reason to do that.

As the holidays approached, Unique was really struggling. By Christmas vacation, she was already so depressed that she wasn’t getting out of bed. The perfect storm of traumatic events that week was more than she could handle – she couldn’t face the idea of having to start another year like that, and on New Years Eve she attempted suicide. She was so upset about not having succeeded… For the rest of her life, the week between Christmas and New Years was the most challenging time of the year for her, with New Years Eve being the worst. It always brought her right back to that night, and that mindset. Soon after that attempt, she had her first psychiatric hospitalization. It helped, for a time, but she went back into the exact same home environment, so nothing really changed.

We still talked every day. I did an honors project for a mental health class, developing a fact sheet on “Depression and Suicide in Adolescents with Physical Disabilities” to distribute to local agencies. I went to visit Unique in the spring, and gave her a copy at her request. She called me that night, sobbing…a family member had found the sheet and told her that if she wanted to kill herself that badly, she should just go ahead and do it, and stop burdening everybody else. She stopped eating, and was hospitalized for an eating disorder. She went back home, and still nothing changed. She started talking about seeing this friendly little alien, hanging out in her room. She joked about it at first – she knew he wasn’t real, but he kept her company. Then she stopped joking…she wasn’t so sure about whether or not he was real. One day she called me in a panic, terrified that he was going to touch her, and that if he touched her she was going to “totally lose it.” She continued seeing and hearing the alien all the time, and talking constantly about suicide. A few days after that I had to leave to work at a new camp for the summer…with no cell phone reception, one shared landline phone, and no internet allowed for the first week. Always the ultimate rule-follower, I convinced a series of new friends to sneak into the computer room with me each day so I could check on Unique.

She ended up in the hospital again. Her grandmother decided she couldn’t take care of her anymore, and at 17 Unique went into foster care. It seemed like it was going well – the family was very nice, and when I visited Unique there she seemed to be doing better. There were of course some adjustment issues, as Unique had never lived in that type of family environment, but she tried to work through things. Since she had a physical disability, Unique could have stayed in foster care until she turned 21. For reasons I was never sure about, the family decided on Unique’s 18th birthday that she needed to leave, that same day. I was in Georgia at that time doing my OT fieldwork…I turned on my cell phone to find a voice mail from a sobbing Unique saying that she had no idea where she was going but would try to call me when she could. With no other options, she ended up in a nursing home. At 18, with the next youngest resident being in his 50s, she was miserable and totally out of place. She was only there for a few months, but consistently said from then on that she would rather die than ever go back to a nursing home.

From the nursing home, Unique ended up going to her first of many SCL placements (basically a group home), in eastern KY. It was a good fit for her – she finished high school, had friends and a boyfriend, went to her prom, and got to have a bit of a more typical high school experience. I didn’t talk to her as often during that time – I’d call her every week or so, but she finally had a real social life of her own. I’m not sure why that placement ended. From there she went to a series of other SCL placements all over the state, most lasting just a year or two – to Somerset, Frankfort, Jeff (a rural Appalachian town outside Hazard), Pine Knot (a tiny mountain town on the TN border), then eventually to Danville, and finally Lexington. I started visiting every summer, and we joked that all her moves were conveniently letting me see the whole state! I always visited with somebody else in those days, and we’d end up just going out to lunch and exchanging small talk…she wouldn’t have in-depth conversations with me in person, but we talked on the phone at least a few times a week. While she was still relatively stable through the first few moves, her life was changing. She was spending her days at day programs with people who were much lower functioning than her, and often living with housemates who were much older, lower functioning, and often non-verbal. She had goals for herself that were very different than her current situation – she wanted to get a college degree, become a teacher, live on her own, get married and have children of her own. She tried to make friends with the staff, and tried to maintain relationships with people from her old life, but it was a struggle for her. She would get close to certain staff, and start seeing them as her family…when they inevitably moved on to a new job, she would be devastated.

The summer I visited Unique outside Hazard was the first time I went to see her on my own. There were some indications that the agency wasn’t the best or safest, but Unique said that things were okay. Later that summer I started having trouble getting in touch with her – every time I called, the staff would tell me she wasn’t there. I eventually found out that she was in the hospital, her first psych hospitalization in years. It was the beginning of a very different phase of her life…the next few years were a constant cycle of hospitalizations. She was chronically suicidal, desperate to find a way to end the pain she was feeling. I got really good at tracking her down, and at getting the staff in various psych units to let me talk to her even though I never had the magic “code number” at the start of each new stay. She was in one rural psych unit often enough that the staff recognized my voice and didn’t even ask for the code number anymore. She started saying things that didn’t quite make sense, talking about the agency administrators bugging her phone and stealing her belongings and stalking her. The agency was shut down not long after, so it’s not too far-fetched that there was some sketchiness happening and her brain was trying to find a way to make sense of it.

After one hospitalization, she was released to a new agency, in an even more rural area. The staff there had never met the “old” Unique – all they knew was her in her current state, still talkative and engaging, but not always quite making sense. So it apparently wasn’t much of a cause for alarm on their end when she stopped making sense completely, but it was for me… Usually when I called her in the hospital, she’d go through a range of emotions throughout her stay, but was always coherent. Until the time I called her and she started mumbling something and threw the phone on the floor. When I called back, there was static on the phone, and she screamed at me to stop crinkling paper in her ear, and threw the phone again. I assumed that once she went home she’d be “back to herself”…but when I called her at home, she didn’t seem to even know who I was. After several weeks of that, and the staff not seeming to care, I decided to go visit her over Christmas vacation. I was so scared for her, and had to see what was going on. It was a strange visit…she was talking very pleasantly about the weather and other small talk, but couldn’t remember what she did on Christmas, 2 days earlier. She didn’t seem to know who I was, and never remembered that visit in the future, even when I showed her pictures.

Unique slowly regained more of “herself” – she was coherent, and knew who I was, and could have regular conversations. She was hearing voices though – constant, incessant voices that shouted awful things and told her all the reasons she needed to kill herself, in a neverending barrage. Counseling services were non-existent in that rural area, and psychiatric services consisted of a psychiatrist visiting a rural clinic once a month, which meant that she got an appt every 3 or 4 months, if she was lucky. The cycle of hospitalizations continued, dozens of them. One summer she ended up in the hospital right before I was supposed to go visit. The hospital only allowed visitors in the psych unit two days per week, neither of which was a day I’d be in KY. After getting nowhere with tearfully begging them to make an exception, I ended up spending an extra $500 to change my flight…for a 1-hour visit that she barely remembered, but that I would do again in a heartbeat. She wanted to move, but nobody would help her start the process. I found the Office of Protection and Advocacy online, spoke to someone, and eventually she was assigned an advocate. She finally moved to Danville, to an agency she’d end up being with for the next 5 years, in various locations. In Danville, she had spinal fusion surgery, which had complications, leaving her in the hospital for months. My usual summer visit ended up being just a short time after the surgery…she was on a lot of pain meds (and I’m pretty sure not on her psych meds), mostly incoherent and talking about babies being in her bed. I visited two days in a row, mostly just sitting there holding her hand, but she barely seemed to know I was there. As I was getting ready to leave on the last day, she looked right at me, squeezed my hand and said “Don’t wait so long to come next time, ok?” Only time I ever cried in front of her…

After recovering from the surgery, Unique tried hard to make a life for herself and exert her independence while she was in Danville, although not always in the most logical ways. She signed up for online college courses, but had trouble meeting the demands – she often called me and dictated her assignments over the phone for me to submit. Even then the stress got to be overwhelming, and she ended up back in the hospital. Then she tried again, at another school, with the same results, and now with increasing debt. She started making decisions that were very uncharacteristic for her – signing up for a credit card, ordering lots of things, then reporting the card stolen. Begging people for their credit card numbers to order dolls, then taking advantage of the one person who agreed (her sister) by going on a shopping spree. She was always trying to guilt me into giving her money (“I guess you don’t really love me then. If you loved me you would trust me”)…it was frustrating, and made it hard to want to talk to her. It seemed to me like she was in a manic phase, but the agency just saw it as a discipline issue.

Predictably, she crashed after that, going into a severe depression. The middle-of-the-night phone calls increased. She was always so apologetic for calling…I always reassured her that I was glad she called, and that sleep was overrated anyway. There were some nights that she was so distraught, and so clear on how she was going to hurt herself, that I was afraid to get off the phone with her. Usually I could eventually convince her to call a staff into her room, to tell them how she was feeling. The fact that they never seemed to notice her sobbing on the phone for hours, and that she sometimes had to shout for a good 15 minutes to get somebody’s attention, was disturbing. The responses she got from the staff, which I could hear for myself in the background, were even more disturbing. “Just go to sleep, you’ll be fine in the morning”…”Don’t say things like that, you’re going to go to hell”…”You shouldn’t talk like that, you’ll scare people”…”Just read the Bible, you’ll feel better”…or my personal favorite, “Stop calling me in here, I have ironing to do.” I asked to talk to the ironing lady…told her what Unique had been saying, and that she really needed somebody to just stay and be with her. “Can’t you just sit with her for a while, and do the ironing later?” She seemed flustered…never really gave me an answer. I had a very long conversation about her with Unique’s case manager the next day! Sometimes Unique would beg the staff for help, and when nobody would help her, she’d call 911, or try to call her psychiatrist at home. Instead of addressing the issue, they took away her phone privileges, only allowing her brief calls monitored by staff.

Sometimes Unique would talk about flashbacks she was having, of traumatic things that had happened in her past. Once it happened while I was on the phone with her…she was panicking, hyperventilating, telling me in vivid detail about sexual abuse she had experienced as a child (“He took his belt off. Then he took my diaper off…”). Another time she called me convinced that her abuser had tracked her down, was in her room, and was about to rape her. It was the most terrified I’ve ever heard her, and there was nothing I could do about it…she wouldn’t call the staff, because she was afraid he’d kill them. Eventually she hung up. I called her back later that night and she couldn’t remember it at all…I like to think her brain was trying to protect her, there’s only so much a person can handle.

In the winter of 2013, Unique found out that she might not qualify for SCL placements anymore. There was a change in the regulations, and her “normal” IQ disqualified her. Her only other option would be a nursing home. Protection and Advocacy filed a lawsuit on behalf of her and others who were affected, and the agency kept providing services for her in the meantime. Unique’s stress level skyrocketed, and things started to go downhill. She had learned to cope with hearing voices in her daily life, but the voices started to overwhelm her. She could feel herself losing control, and was terrified that what happened a few years ago was going to happen again. I kept reassuring her that now that she knew herself better, and knew how to advocate for herself, things wouldn’t get to that point again. She tried to ask for help, from anybody she could think of, but everybody minimized what was happening, and accused her of just wanting attention. I spent hours every day on the phone with her, sometimes just listening to her cry and telling her I loved her. That several-month period was the most stressful I can recall in my life…it involved me buying a house, taking my first mission trip to Jamaica, getting the house ready, and moving, all while working 2 jobs and spending up to 8 hours a day on the phone. It was awful…I tried to get help for her too, from her case manager and the advocate. But everybody was just focused on the lawsuit, and on the fact that the agency wasn’t getting paid. This is part of the e-mail I sent to her advocate that May…

“Over the past week and a half or so it’s like she’s hit a breaking point. She always talks about hearing voices, but is generally able to handle it. Now she says they’re constant, screaming at her, so loud that they fill up the whole room, and that nothing she tries makes it any better. She said if she tries to ignore them, they keep getting closer and closer until they “come out of my head and then they’re in my room for real.” I’ve been talking to her every day, for hours, and you can tell when it’s happening – she can hold it together and carry on a conversation for limited periods of time, but then she stops in the middle of sentences, can’t focus, gets confused, and sometimes starts panicking. She’s been starting to have trouble differentiating what is and isn’t real – she was totally convinced last week that the staff were recording everything she was saying to use against her, kept saying she could hear them talking about it and could hear them playing back her words in her voice, then sometimes it was her words in somebody else’s voice…she couldn’t even talk about it at first without having an anxiety attack, kept telling me she wasn’t safe there. She’s said she can’t read or watch TV, because it feels like the characters are talking to her. She’s tried talking to the staff, but they don’t take her seriously, chalk it up to stress about the hearing. She’s started talking about wanting to hurt herself to make the voices go away… She’s so scared, can’t stop crying most of the time I’m on the phone with her, keeps saying she feels like she did before that other episode years ago. It may have started with her being stressed, but it’s way beyond that at this point, and more than she can handle on her own. I know that people think she does things just to get attention, but that’s not what’s happening here (and even though people are in fact being paid to pay attention to her, she’s not getting any for that…when she’s really scared because she’s seeing things and wants a staff to come in so she’s not alone, she’s said she has to make up a physical reason because they won’t stay and talk to her otherwise).”

They eventually won the lawsuit, allowing Unique to continue staying in the SCL placement. By that point I’d watched Unique’s worst fear, of totally losing control, play out. She couldn’t have any kind of conversation that made sense, and often didn’t seem to know who I was. When I visited that summer she was convinced that she had just been in an awful car accident, and that she had all kinds of broken bones and wounds…she sobbed that she didn’t want me to see her like that. Not long after that, she stopped talking completely, for a period of several months. I still called her everyday, and had one-sided conversations, to the sound of her breathing, or sometimes crying. In the middle of that, she moved to Lexington…to a new house, with new staff who didn’t know her as anybody other than this silent person. The staff were confused about why I would be calling her… one guy, who barely spoke English, took a full year to understand that I was her friend. Other staff caught on faster and got used to my calls…one guy talked to me so often that he started answering the phone in a falsetto when I called to try to trick me.

When Unique eventually started talking again her version of reality was very different than mine. One time when I called she was distraught because she was sure that somebody had just broken in and sliced off everybody’s heads, then reattached them with ribbons…and that if somebody pulled the ribbons all of their heads would fall off. I heard staff in the background trying to reassure her that their heads were all okay…then she started shouting and threw the phone. Other times she had elaborate stories about her life, which sounded totally plausible, except that none of it was accurate. She would tell me about her spouse, her kids, her college degrees, her jobs. She was sure that she really worked for the agency she was living in. Any attempt to gently question a story led to her yelling at and hanging up on me. I learned to just go with the story, and respond to the emotion behind what she was saying rather than the content…but it was hard, and it went on for long enough that I was afraid that the friend I knew was gone for good.

Eventually I started seeing glimpses of Unique’s personality again. It took a long time for her to get back to herself, and was never a “complete recovery.” When she got too stressed or overwhelmed, sometimes she couldn’t fight the voices anymore, and they would take over. When I visited that summer, she was just starting to be more coherent…it had very clearly been a traumatic thing for her to go through. On the first day of my visit, she asked for a hug, then grabbed me as hard as she could, hanging on for dear life and crying that she didn’t know what to do anymore…it was heartbreaking.

Over the next year, she had her ups and downs. She had very little quality of life…she hadn’t gone to a day program in years, and very rarely went out in the community. Her days were spent at home, mostly in bed. She had always had ongoing issues with her back after the surgery, and spent most of her time in pain. She could sometimes have great conversations, about books or TV shows or cooking, but it was obvious that she was still really struggling. In May, she ended up in the hospital because of issues with her back. She ended up being in the hospital for over 4 months…never getting out of bed, or going outside. Then she found out her grandmother had passed away…Unique had been convinced that her grandmother died a few years ago, and the news really threw her for a loop. She was convinced that her family blamed her for not being more attentive to her grandmother. When I visited that summer, she was clearly exhausted, both physically and emotionally. She just wanted me to sit there and hold her hand, and I did, for hours…she would periodically look at me and tell me that I would never know how much it meant to her that I came.

After my visit, I tagged Unique in a picture on facebook, as I had every year…and all of a sudden a bunch of her family members started contacting me, asking about how to get in touch with her. I asked Unique if she wanted to talk to the first person who asked, and she said yes…but then multiple family members tried calling her, and wanting to visit, and Unique panicked. She was sure that they were going to try to find her and hurt her, or let other people who wanted to hurt her know where she was. She unplugged the phone in her hospital room, and refused to talk to me when I called the nurse’s station. It took a while for her to relax from that.

All the time in the hospital started to get to Unique…she was struggling more with the voices, and flashbacks, and with feeling like she was losing control. I convinced her to talk to her favorite nurse, who had her talk to the chaplain…which helped, but not enough. To make matters worse, she found out that the agency where she’d been living had been forced to close its residential programs…she didn’t really need to be in the hospital anymore, but there was nowhere to discharge her to, other than a nursing home. So she just stayed in the hospital, week after week, which had a huge emotional toll. She talked about how tired she was of fighting, how she couldn’t do it anymore. She begged me to come back and visit again, saying she really needed me and didn’t think she was going to be around much longer. I couldn’t…but I posted a plea on facebook asking for anyone in Lexington willing to do a good deed. That led to connecting with a friend of a friend, who was incredibly awesome and started visiting Unique almost every week. The first visit was great – Unique was having a good day, and they talked about poetry and other things. When I talked to her later, Unique was so happy about the visit (the first person to visit her in the 3 months since I’d been there).

The agency Unique had been living at had to keep one home open until all the residents could be transitioned elsewhere…and so eventually they were forced to take Unique back, even though they didn’t want to. It wasn’t a great situation, and Unique continued going downhill emotionally. Her case manager was looking for other options, but without much luck. I called Unique all the time, but there weren’t many conversations that made sense. One day, out of the blue, she was totally “herself”…and kept telling me that no matter what happened, or what she said at other times, to just know that she loved me. I did think back on that over the next few weeks, as she sometimes screamed at or hung up on me, or more often just refused to take the phone. There was a positive at one point – an agency in Somerset was interested in possibly taking her, to live with a family. They had an initial visit, and it went well. Unique was so excited, but also so stressed about making it work…by the time her weekend visit with them came, she was almost incoherent. The family decided she wasn’t a good fit.

Unique was sick a lot…she always seemed to be dealing with respiratory issues and stomach issues. Some of the staff seemed to get tired of dealing with it, and weren’t as responsive or attentive as they should have been. For the last few weeks, every time I called they would tell me that she was either sick or asleep. I called on the night before Thanksgiving, and was told that she was asleep, and to call back in the morning. When I called in the morning, they said she was in the hospital. When I called the hospital later, she was in the ICU. Her case manager finally called me back on Friday night…Unique had had emergency surgery, with some other complicating factors, and was very sick, but expected to be okay. She passed away early Sunday morning. Her case manager called me. I got another call a half hour later…the staff person who used to answer the phone in a falsetto had looked up my number and called me on his own to make sure I knew. If Unique had made it through the surgery and recovery, she most likely would have ended up in a nursing home…her worst fear. Her story was never going to have a happy ending, unfortunately.

That’s the story of Unique’s life as it intersected with mine. The other part of the story is about our friendship, and what it meant to me. It was easy for people to see how Unique benefitted from our friendship – I was a source of unconditional support for her, and for many years the only person in her life who wasn’t paid to be there. But some people seemed confused by our friendship – they didn’t see how it benefitted me, and assumed I must just feel bad for her. Sometimes she jumped to that conclusion too…her depression often made her feel like she didn’t have any redeeming qualities. Why would anybody want to be her friend, with all the “drama” that entailed? The reality is that my friendship with Unique had more of an impact on me than I could ever put into words. I’m going to try though, as I tried to do with her when she brought it up.

My friendship with Unique was never “equal” – I was almost always cast in the “helping” role, and had to make allowances for her that she would never make for me. But nobody was more aware of this than she was, and when she was able, she did everything she could to equalize things. When she was going through some of her most challenging times, she would still always be sure to check on me. During those marathon phone calls while I was getting my new house ready, she would ask everyday, through her tears, about how things were going. Almost always, when I could tell she was really upset, she would turn it around and ask first if I was okay, if there was anything I needed to talk about. She was always worried about making me upset…I spent years trying to reassure her that it made me more upset to think about her lying in bed crying by herself because she wouldn’t talk to anyone. She was a good friend when she was able to be, plain and simple.

When she was having a hard time and trying to hold it together, Unique would often say, “Give me 5 reasons that you love me.” The first time she asked me, it caught me off guard…I wasn’t used to having conversations like that. I wasn’t used to talking about my emotions in general, and I’d certainly never told her that I loved her. I’d spent years by that point listening to her talk about how she was feeling, and trying to counter the negative thoughts. I resisted at first, and saw how upset it made her…her life experiences and her depression had told her that she wasn’t worth loving. She needed to hear that she was, and she was trusting that I could tell her that. So I did…that night, and countless other times over the years that followed. And I learned something from each of the qualities I admired in her.

· “I love your sense of humor.” Unique and I figured each other out pretty quickly…I knew how to make her laugh, with sarcasm and silly stories. She figured out that I found it hysterical when she used the phrase “I reckon,” and took to randomly throwing it in conversations. I learned that “sometimes the only sense you can make out of life is a sense of humor.”

· “I love that no matter how bad you’re feeling, you’re always concerned about other people.” Unique was always worried about making sure everyone else was okay. She wanted everybody else to be happy, even if she wasn’t. I learned that there are a lot of different ways to be selfless.

· “I love that you’re getting so good at advocating for what you need.” It took a long time for Unique to understand herself – how her mental illness was impacting her, what made things better or worse, and what support she needed. But once she got there, it was pretty impressive to listen to. I felt like I knew her pretty well from sharing in her experiences, but listening to her talk about it was a whole different perspective. Unfortunately she very rarely got the support she needed, but it doesn’t discount the amazing progress she made in advocating for herself. I learned so much from her experiences.

· “I love that you never give up, no matter how badly you want to.” I spent dozens of nights on the phone with Unique when she wanted desperately to die. I know how hard she fought to make it through everyday, trying to maintain some control of her life and her thoughts. She kept going, even when she really didn’t have reason to. I’d tell her, over and over again, that things would get better, that they always do. She’d agree – things always do get better, but then they just get worse again. She was right. But she kept going anyway. And I learned what perseverance really means.

· “I love that no matter how bad things are, you always come out on top.” Coming out on top is relative, but Unique made it, for years, through some seemingly insurmountable situations. I learned to never discount what she could do.

So what else did I learn from my friendship with Unique? The most obvious is that I learned more that I ever imagined about mental illness. Before I met Unique, mental illness just really wasn’t a part of my world. And then all of a sudden it was. I remember Unique’s first psych hospitalization…I was so confused. Psych hospitals were for “crazy people”…Unique wasn’t “crazy,” she was my friend. But the hospital stay helped her, and I realized that all those other people in the hospital probably weren’t “crazy” either – they were just people like Unique who needed some help. As Unique’s mental illness got more complicated, I started reading every memoir and first-person account I could find, wanting to be able to better understand what she was experiencing. With her blessing, I started sharing some of her experiences. As soon as I started talking about and posting about her story, I saw the “no kidding, me too!” phenomenon in full force. People started sharing their own stories with me, and I began to realize just how much mental illness impacts all of our lives. I started to see clear examples of how sharing those stories was breaking down stigma, one person at a time. I also started to notice the little things that increase stigma…the memes joking about the “voices in my head,” the sensationalized news stories about psycho killers, people trying to “diagnose” politicians with mental illness to explain their behavior. So much change is needed, but it has to start somewhere.

My friendship with Unique had a profound impact on how I interact with other people. I wouldn’t say that I was a great listener before I met her…I was quiet, so people thought I was listening, but there’s a big difference between listening to reply and listening to understand. She used to accuse me of trying to lecture her at first. I learned to take a much more active role in listening – to really try to understand what she was experiencing rather than just jumping to conclusions or judging her. There’s so much more to any of us than meets the eye – we just have to take the time to see it.

My friendship with Unique taught me to trust myself and my instincts, and not to have to rely on others for validation. There were times that my interactions with Unique were extremely frustrating. She wasn’t thinking logically or rationally, so having any kind of “normal” conversation was impossible. I still wanted to be there for her, but it was definitely a challenge…trying to not take things personally, to not get defensive, to stay calm and rational in conversations that were anything but. Trying to figure out how to respond to her was a huge learning curve, and a lot of trial and error. I eventually learned to just go with the flow, and to respond to the emotion behind what she was saying…trying to make her feel supported, even though she wasn’t able to give me that feedback. There were others times when she was too depressed to answer the phone, or to respond at all. I would do whatever I could (leave messages for her, send cards, etc), and try to trust my belief that it would make her realize that I cared, even if she couldn’t respond. Other people often made it clear that they didn’t feel that Unique was worth all that effort. But I knew that she was, and that was enough.

I’ve never been an emotional person. I was always telling Unique that it was okay to cry…that I would rather she cry on the phone with me than lie in bed crying by herself. I almost never cried on the phone with her though, or at least not so she would be aware of it. After my last visit this summer, she was so emotional…she was having such a hard time, and was convinced that it was the last time she would see me (she turned out to be right). That phone call really got to me…we cried together, her in the hospital, me in my hotel room. And it was okay…there’s something special about sharing that. I’ve also never been a physically affectionate person…my mother could tell you how much I hate hugs. But Unique needed that physical affection more than anything. It was one of the great ironies of her life…she had a physical disability, and needed physical assistance for all of her personal care. People were constantly touching her, but never in a way that gave her any comfort. I always hugged her when I visited, because it seemed like the normal thing to do. But in between those visits, all year, she would talk about how she wished I was there, because she just really needed a hug. We’d talk all the time about sending virtual hugs to each other. At some of her lowest points, when she could barely talk, she’d talk about how all she wanted was a hug. On one of my last visits, in 2014, she asked for a hug as soon as I got there, so I of course obliged. A little later she looked sad, saying she wished she could have another hug…I told her that she could have as many hugs as she wanted, and she started crying. That killed me…I’m still not a hugger, but we all need to feel supported, and sometimes that physical closeness can make all the difference.

Unique taught me how to be an advocate, and to stand up for myself and for others. Growing up, I hated talking on the phone, avoided any controversy, followed every rule, and generally tried to fly under the radar. As the years went on in my friendship with Unique, I found myself repeatedly e-mailing and calling case managers, administrators, and her advocate, and not giving up until they at least got the point. I politely educated staff on why they needed to do their job. I got really good at getting people to circumvent HIPAA and tell me where she was. I ended up being the only person who never lost touch with Unique, mostly because of persistence…if I had missed one time she moved, it’s possible I wouldn’t have been able to track her down again. She stopped being surprised to hear from me in each new placement or hospitalization, but was always relieved.

So why put all of this in writing? Somehow, against all odds, I ended up as the keeper of Unique’s story. We came from completely different backgrounds, and lived across the country from each other. We saw each other once a year. But for whatever reason, I ended up as the only constant in her life – the only link between all the different places she lived and all the different things she experienced. We all need a witness to our lives…somebody who can vouch for the fact that we existed. It would be easy for Unique’s story to be forgotten. But it won’t be, at least as long as I’m around. Her life mattered, and her impact will live on.
Posted in Guest Post, stigma | Tagged , , , , , , , , | Leave a comment

Guest Post by Kate Topp

Don’t allow the fear and lack of education from others make you feel like a burden. Don’t allow them to tell you that you are ‘faking’ your illness. You know that something is wrong. You know within yourself that you are struggling.

The struggle is real. The stigma surrounding mental illness is real. I will fight to end the stigma of mental illness and the effect this has on people. I want you to know that you are not alone in this struggle. You will never be alone.

Finding out that you have a mental illness such as depression or anxiety can be terrifying. It can be so overwhelming and confusing. It’s made so much harder during the weeks or months before you are diagnosed if no one believes that your struggle is real.

Please never stop fighting. Educate yourself as much as possible on your illness and educate the people around you. You deserve to live a happy and fulfilled life filled with love, compassion, caring and understanding; from the people around you and from yourself.

If at the end of the day, no-one understands the struggles you face, please realise that the people that care about you may have struggles of their own and they may not have the education or understanding to know that your struggle is real. Please don’t let the people that care about you, put you down or make you feel like a burden.

If you have to stand on your own to fight this battle within yourself, please find the courage to do so. Please never give up! You are worth the fight. You will never be alone in this fight with yourself.

If you relapse or begin to struggle again, please don’t let this discourage you. There are people in this world who care about you and your wellbeing. These may be the people you would least expect and great friendships can be formed.

Please reach out to someone if you are struggling. If you don’t receive the support you need from the person you reach out to, please continue to reach out to other people until you are heard.

Be brave.

In order to ‘recover’ there will be setbacks. There will be days where you relapse or when you take 1 step forward & 2 steps back.

On the days that you find yourself feeling overwhelmed and worthless because you have made so much progress and then you find yourself taking 1 step forward and 2 steps back, just know that you will always be one step ahead from where you initially started.

No matter how many times you struggle or ‘take a step back’ just know that you are stronger and braver than you ever were before you began this journey.

Posted in Guest Post | Tagged , , , , , , , , , , , | 2 Comments