On understanding disabilities and medical conditions

[brightlotusmoon]

Reading something that Josie posted in a friends-locked entry made me really think about how people are often treated when they have a physical disability, mental illness, or limitation that is constant in their daily lives. Sometimes I wonder if some people see it as, "She/he is a disabled person (and that's it)" or "She/he can obviously stop having these problems with a little more effort." Not looking at the whole. Not seeing that the person is complex and complete, and the conditions are merely part of who she or he is, not some separate entity that can be channeled or turned off at will.
(Quoted phrases within the following passage are from Josie's post.)
I was thinking about what I might do if I had been in Josie's sort of position, forced to defend herself against a verbal onslaught, being accused of "using" her handicaps to gain support, sympathy, or social "privileges". If I say that I'm tired or in pain because of my epilepsy or cerebral palsy or sciatica or asthma, I don't want people to think I am "forcing the issue and announcing that I expect special treatment physically and mentally." Quoting directly: "I would give honest answers to questions like 'how are you,' or 'what's going on with you,' or 'why can't you do X activity,' but that was only so that they knew where I was coming from, and the reasons behind my actions. I wasn't aware it made any demands on anybody to make allowances for who I am as a person." I agree, and I don't want people to think that "...if I tell people things about what is going on physically, it makes them feel obligated to make more allowances than they are comfortable with." I also agree with Josie that if they want us to be honest with them, they should not accuse us of playing for sympathy.
I am stating a fact: I'm not doing so well because of my disability/illness. Can you help a little me just until I feel better?
(There seems to be this constant thing between my husband and me. Because of how he was raised, and how he helped take care of his severely disabled brother, Adam believes that I should be able to do anything by myself, given the proper tools, motivation, and expectation. He sometimes will question my requests for help, thinking I'm trying to get out of doing things, making excuses or allowances for my pain or exaustion. And this often makes me angry and upset, and overly emotional. Because I feel that he is not even acknowledging the fact that yeah, I'm having problems and I actually do need help. I don't need him to help me every single time, but this time, because goddamn it everything fucking hurts. I understand that I am perfectly capable (read, my word nemesis, handicapable), but a little help might be nice. And he doesn't seem to understand why I blow up and become so upset. It's not because I'm trying cop out or make excuses. It's because hey, fuck you, I'm hurting, I don't want to cause myself more pain and aggravation, I need some help. But I also understand that he wants me to at least attempt the task as much as I can. It can get frustrating. He and are working to understand each other. Communication has always been the firm foundation of our relationship, which I am glad for.)
I just don't want to come off as sounding whiny or attention-seeking. If I'm not in pain, I'll say so. If I can do something alone, I will do it. I'm not an invalid. But just because I need help sometimes doesn't mean I am asking to be treated as special or allowing my disabilities to be... pampered, for lack of a better word. And here I am speaking for everyone with any kind of medical condition.
On that point, now, we come to the concept of, "Well, why can't you just stop being so sick/being in so much pain/being mentally sick?" You cannot ask a person with depression to "Cheer up and smile!" You cannot ask that an epileptic stop having seizures. You cannot expect a person with MS or Lupus or cerebral palsy or Parkinson's to stop being in pain, to not be exhausted, to walk normally, to be perfectly normal. It won't happen. We do not have a magical Off switch. If we did, it would have been hit long ago and broken off in the Off position. We cannot make it go away. We cannot stop it. But we also will not allow it to control us, take us over, and hurt us any more than it does now. We will not just lie down and accept it. And that, I think, is something that needs to really be understood. If I say, "I'm so sorry, but I'm in a lot of pain; I can't really do this right now," I want people to accept and understand it without assuming I'm just expecting that sympathy and special treatment. I am being honest, which sometimes may be misconstrued as "please pity me." As Josie said, we cannot control how our conditions affect us. Don't expect us to be able to. We're not being oversensitive; we are being truthful. Just give us the same consideration you would give anyone, and just understand that we do have certain limitations -- even if you don't believe we do.

Public service announcement over. Thank you.

Comments

hey...

[xanateria.livejournal.com]

sorry to jump in. Josie here, the girl whose post rosefox8 was quoting. I just have a comment...

"She was very approachable and able to talk openly about her condition w/ anybody who asked. But her bridging the gap first made people feel a lot more comfortable."

I applaud the sentiment behind this, but as someone who used to do this alot, I have to say, sometimes it gets really old that we are expected to use things like humour to make others comfortable. I'll answer any question anyone asks, but it's NOT my job to make them comfortable with the MS, the CP or any of my other health issues.