Well said! I’m currently in the thick of sorting these things out… I’m recently diagnosed (in the last year), but with longstanding mental health challenges including a particularly bad episode of psychiatric trouble as one of the elements that supports the SLE diagnosis! It was treated as a purely psychiatric issue at the time, and only now is being re-examined in light of having definite SLE. I also have a family history of psychiatric illness, so I may simply fall into both camps at once… Wow, did i just say “simply”? Actually nightmarishly complicated, which is where those coping strategies you listed are so essential!
I find myself in the position of wondering whether my lupus treatment will alleviate it to some degree and allow reducing use of psych meds, whether I need to continue or escalate the psych meds, and whether I will respond well enough to either one to get on with life in decent shape! In all cases, I’m seeking out coping strategies and extra counseling to keep mental/emotional agitation from worsening my physical health and vice-versa. It’s so hard to grasp even for myself (and I tend to be highly introspective, plus hold a degree in neuroscience…) and nearly impossible to communicate to others who are fortunate to have their mind, just as their body, work pretty much the same way all the time.
Some people I’ve encountered are simply too impatient or inflexible to understand, compassionately support, or even just tolerate the challenging mental and behavioral states I go through, while others seem to intuitively know what I need and intervene in just the right ways. I love to have those amazingly helpful and kind people around me, and desperately fear wearing them out! (and of course the anxiety I have over stressing them out makes me freak out even more… Working on breaking that cycle as a top priority!) I’m slowly learning not to waste sweat and tears trying the impossible task of winning over the ones who don’t or won’t get it… But I hate having someone walk away thinking terrible things about me that aren’t a fair judgment. So, in the midst of these challenging periods, when I should just be doing everything possible to recover, I’m frantically trying to reduce my impact on others and feeling self-conscious of what still others think of me! I’m sure everyone on this site knows THAT sinking feeling…
I try to focus on successes, of which awareness certainly is a major one, but it’s hard not to feel like I keep falling short! It adds even more stress as I watch the drama unfold like I’m in a movie with no pause button, with recurring scenes of disappointment and heartbreak that I’ve been through too many times but can’t seem to alter yet despite my growing awareness. (I understand cognitive-behavioral therapy is aimed at discovering that pause button I’ve never been able to find, so I’m getting into it finally after years of thinking I should!) Becoming aware of everything without having many tools to address it has been a really painful time, and I feel horribly misinderstood by most people, but looking back it’s actually not as tough as a lot of my past. Sometimes I even succeed at being patient and kind with myself and proud of how much progress I’m making all the time in learning to cope, not only with my illness but also myself! Being here sharing wisdom with people who actually get it firsthand makes me feel like I’ve been granted a code-breaking manual. It’s been an invaluable source of support and clarification of what I can and can’t control. My tendency is to try to control everything while feeling totally out of control, so it helps a lot that I’m learning to let (some) things go.
Most of all it’s hard to accept the paradox that it’s not my fault these things wash over me, yet it’s my responsibility to handle them if I want a good life for myself to live and to bring good to others. It gets exhausting being expected to be a superhero when I feel totally broken. I battle with bitterness towards those who don’t have to work so hard just to go on daily (thinking “if you think it’s so hard on you dealing with me, try imagining how it feels BEing me, being trapped in this malfunctioning body and even mind, and expected to contain the damage from all the stronger people around me who can’t be bothered to help or at least wait it out!”) I recently expressed to a potential romantic partner (that wasn’t working out, as usual, and thus I could feel more comfortable to say what I really think in discussing how he could be “just a friend”) that what I REALLY want is someone who realizes how excruciatingly hard I have to work to accomplish anything, even something that comes out looking more like a mess than a success, who then truly wants to work even a fraction of that amount to make things a little easier for me. Because I know I can do and give and incredible amount when I have the support to be who I’m meant to be. I just need a lot more help to get there!
Thanks for help you all lend with your words; they have such an impact and I feel so enabled when I can do the same by sharing my stories and reflections in return! Now if the rest of the world would just figure out that dynamic 
(well, actually, I hear community-based living and extensive mutual support are common in some other societies, or subcultures within this country, but it certainly isn’t popular in the context of mainstream American individualism! But that’s another rant entirely…)
Brynn
(you can find older posts under that screen name that I got locked out of)
