Saturday, December 28, 2013

Missing a certain kind of community

When I lived in the city there was a really good mood disorder support group that I went to semi-regularly. It was big- they had to break it up into different rooms. The people were interesting, and ranged from psychotic manics and just-out-of-the hospital depressives to people with families and professional jobs. It was never boring. I could always find someone in the group to relate to, and I made friends there.

Now I am living in a much more remote area. There is one club house type organization in my town. I went there one day when I was so desperate to tell someone who I really was- I was severely depressed, and tired of the act I was constantly putting on, feeling like an imposter (and an increasingly bad one).

But I went there, and the people were nice and welcoming, but no one else there worked. No one else was an imposter- they just were. And while I was worried about keeping my job, they were worried about SSI benefits. I have been there- I was on disability. But that is not were I am now. These were not my issues. I didn't fit in.

There is another, slightly further away meeting just for mood disorders. I have gone, but not usually felt like I connected very much. But I should try to go again. Maybe it will be different.

There is a cost for being "high-functioning." And that cost is that I feel like the real me isn't known. If I make it in to work, I must be okay. That is what the world thinks. I may have spent 2 hours to get myself to stop crying so I can get dressed and in to work. It is this huge denial of self sometimes, it feels like quite a cost.

The cost is worth it to me, of course. At least so far. I love my work, can't imagine my life without it. But what I do is not without cost. I suppose that could be said of anything. Maybe I am just complaining.

But I would like to again find the company of people who understand this cost, and who understand the sometimes precarious nature of our recovery. Miss a few light sessions. Throw up a couple of nights worth of meds. Things start to unravel for the smallest of reasons. I think I am starting to mend- but it has meant two days of not doing much paperwork at work, and I will have to catch up. Am I supposed to tell my boss that? I never want to use my illness as an excuse. But it is a reason.

I am mending. I like that word. It sounds like an active process and not some kind of passive thing.


Just Me said...

When I was newly diagnosed and in the clinical trial one of the drs. told me "High functioning bipolar patients are the best actors in the world". I found that so true as I never fit in anywhere for so long.

I had huge struggles with finding support groups that met my needs. I once contacted a group after my therapist encouraged me to see if they could meet my needs and the nurse that led it gave me quite a lecture about high-functioning not mattering. I tried to say that I meant only that my issues were different that someone well like me now and she maintained her ruffled feathers so I never went.

Now it is hard to go for the opposite reason; it's too easy to fit in and that's hard to feel comfortable with as well.

I hope you find something that lets you take off the actor's cloak for a bit. Wearing it is so draining and keeping the secrets is even more so. I admire you for keeping on with doing it when it is hard. I know how much energy that takes, every minute of every day.

Jean Grey said...

Thank you so much.

Just Me said...

I really owe you a thank you. I sometimes am used to what I can do now and I forget how much different that is than what I used to be able to do. What you wrote reminded me of what that fight was like and how it was often so much a fight for everything: to be awake enough for a safe commute, to get paperwork done, to remember all the patients I was supervising, to behave appropriately, to control the paranoia, and to just have to THINK constantly to be able to do what should have been second nature. Every time I remember the last Medicare change I endured and how incredibly difficult that was I know how much I functioned on constant cognition and that's exhausting and it is no wonder it causes cyling.

Even now that happens, just with lower level tasks. I made myself laugh the other day. I need to have ankle reconstruction done and given the increasing tightness in my Achilles I'm guessing fairly soon. I want to do home health for therapy to avoid co-pays. I started to email a former co-worker to verify that I'd be homebound. When I wrote out the description of entrance/exit to my home combined with barely leaving home because of psych it is pretty clear I could get homebound psych services now if I wanted and will easily be homebound after the surgery, whenever it is (fall I hope).

I hope the weekend was restful.