Undercover Mental Patient Survival Guide
What to do when your care network goes upside down on you.
This story was originally published under a pseudonym by Beth Gadwa, now a bipolar life coach. Read more from her at http://www.bipolarlifecoach.com.
“I need your help. I’m worried my boyfriend is going to hit me.”
I had been trying to talk to Elayne* for three weeks before approaching her at a friend’s party. She was a professional musician, known for her mixing of cocktails, her beautiful garden, and her baking of cakes. She was a woman I admired and had known for a little over two years. She and her husband were listed on my Plan of Care.
“Isn’t there somebody else you could reach out to? What about Linda?”
“Linda doesn’t know I’m bipolar.”
“Well, why don’t you tell her?”
At that point in time I had eight friends and three family members listed as contacts on my Plan of Care. I was beginning to realize that the information I had so naively and trustingly shared could be used against me.
People who are able to successfully manage bipolar disorder are often charismatic, motivated, and intelligent. We have big goals and big dreams. We stand out. Sometimes that makes us enemies.
Ironically, it is the people with mood disorders who are healthiest — those for whom treatment and medication have worked — who suffer the most from stigma.** These are people who are out in the world; competing for jobs, attention, recognition, and life partners. They believe that they are fully human. They believe they deserve respect, love, and dignity. They may even vocalize and articulate these needs.
I was diagnosed bipolar at the age of 23, after a having a sort of epic psychotic vision quest while traveling alone in Costa Rica. That fall I started on Lithium and never looked back. I saw a therapist and found a good doctor. Over the next 15 years I got married, got divorced, and wrote a book. Today I own my own home and business. To clients, colleagues, employees, and casual acquaintances I “pass” as normal.
Managing symptoms and medications over 15 years is an inexact science, but it can be done. It takes hard work and attention to detail, careful monitoring of diet and exercise, and the time and resources to educate one’s self. I didn’t see myself as broken, just different. Over time, I learned that not everyone saw my diagnosis the same way.
I didn’t see myself as broken, just different.
I had approached Elayne because she and her husband were the only local people on my Plan of Care list who had a driver’s license and didn’t have children. I didn’t want to put anybody’s children at risk.
After that night in November, I figured I was on my own. I tried to minimize the damage — wrote a note to Elayne’s husband the next morning confirming they were off the list. I tried to shrug it off. Didn’t work.
That boyfriend never hit me, but we fought nonstop. He packed up his pickup truck a few weeks later and drove back to his family in Baltimore; without ever saying goodbye.
I don’t know why Elayne refused to help me. That summer, at her request, I threw her husband an elaborate, catered birthday party in my backyard — complete with outdoor movies, grilled leg of lamb, and flaming tiki torches. Just a few weeks earlier, when she was discharged from the hospital after a bad respiratory infection and couldn’t keep food down, I gave her my entire personal stash of weed to help with the nausea.
We were part of the same bohemian, artistic community in what seemed at first to be the perfect idyllic small town. In 2010 I injured my hand badly and couldn’t work or drive. Friends brought me meals and checked up on me. We did the same thing every time someone was sick or expecting a child. We celebrated solstice and equinox at each others’ houses.
I still grieve for that community. I don’t think I can ever fully gain back my trust in a network of people, but I can share a few lessons learned.
Tips for Reaching Out Safely
- Trust, but clarify. Before letting somebody new into your care network, speak with them about expectations and responsibilities. Discuss potential scenarios, and how caregivers would be expected to respond.
- Talk about boundaries. A friend may be fine with driving you to a doctor’s appointment, but not with having you stay overnight at their house. That’s OK! Remember, friends who agree to be part of your network are doing so as volunteers. Meet them where they are.
- Privacy matters. Speak explicitly about what information is OK to be disclosed, especially with spouses and significant others. People love to gossip, and even “private” conversations can be screen captured on social media. If possible, have members of your care network sign a non-disclosure agreement.
- Discuss exit strategy in advance. Nothing is worse than finding out you are alone at the moment when you need help most. If somebody no longer wishes to be part of your care network, it is their responsibility to let you know in advance and not during a crisis. If possible, they should work with you to find a replacement person.
Advice for Caregivers
- No one is stigma-free.** Just like racism, everyone is to some degree affected by our society’s pervasive climate of fear and ignorance regarding mental illness. Caregivers are on the front lines and experience the highest levels of stress. When therapists, doctors, relatives, and friends reexamine their own assumptions about mental illness, they can reinvent unhealthy dynamics and strengthen relationships.
- Avoid a single point of failure. You do not want to be the only person somebody is depending on! Work to find additional professional resources — counseling, peer support, emergency hotlines, and online forums — to help the person in question get the emotional and medical support they need, and have a backup plan in case of emergency.
- Be mindful of a shattered ego. If somebody you love has lived through a serious bout with mental illness, they are probably grappling with whether their life even has value. They will feel marked, and changed. They may not express their shame and fear to you, or it may manifest as hostility. Do whatever you can to remind them of their aspirations and goals — that this is just one chapter in their lives, not the whole story. If you find yourself being critical or talking down, take a step back.
- Be good to yourself. Spending time with somebody who has just gone through their own personal hell is exhausting, to say the least. Take time for yourself, and practice self-care. Think about getting therapy for yourself, as well. Remember that it is good and healthy to set boundaries.
Why Privacy Matters
Out of 603 friends on Facebook, I count five with a clinical diagnosis of bipolar. They are scientists and Ivy league professors, musicians, artists, and moms. One is a former fashion model. They are some of the most talented and creative people I have ever met. All are closeted.
This is what it means to be bipolar in 2016 — either you are a superstar (Ted Turner, Jane Pauley, Patty Duke, Mariah Carey, Kay Redfield Jamieson), you are invisible, or you are incapable of hiding. If you are invisible, you have to worry about things like when to tell a friend or lover about your condition. You have to consider whether it will cost you a promotion, if you disclose your health status to your boss. You carry spare medications everywhere you go, unlabeled, inside an old Altoids tin.
If I could be fully open about my disease I would be. But for me, that would mean giving up the work I love. Maybe it’s worth it, who knows?
This essay is written for those of us who are invisible. This is an essay for those of us who have something to lose by going public. This essay is written for those of us who have lost somebody we loved, for the simple crime of being ourselves.
* Names have been changed.
** I hate the word “stigma” and believe it causes actual harm. But this article is going to be long as it is, so we’ll use the established shorthand.