Warning: Sickie whining ahead.
Instead of boring you all with my last few weeks which include lots of swelling, work issues, home problems with a nice dose of PMS for some kick, let it just be known that I am having a hard few days.
I realized this clearly when I saw this picture on But You Don’t Look Sick? this afternoon. For those of you too damn lazy to click the link (or those of you with shitty filters at your work computers [although I realize that putting the word ‘shitty’ in this entry may have just made this entry unreadable anyway]), it’s a picture of one of the But You Don’t Look Sick contributors with her family at the Lupus Walk.
I started crying at my desk, because I want a “real” disease.
Let me clarify. HAE is a “real” disease. It’s in the DSM and everything. There are doctors who (attempt to) treat it.
But there are so few of us (about 6,000 in this country, by my calculations) and we are so distant from each other (I know of only four other patients in the metro area, and I have never, ever met a person with HAE) that there is no sense of community. And, we certainly don’t have ‘events’ that would bring us into touch not only with each other, but with the community around us.
Part of the bitch about having a rare and relatively ‘invisible’ disease is that most people don’t see you as sick at all. I don’t necessarily want people to see me on the street and think, “Hey! That chick has something terribly, terribly wrong with her!” (if they are not doing so already), but it would be nice to have a little bit of the compassion when I’m not feeling well, and not functioning at the top of my game. When I do have to go out in public during a flare – which I try to avoid at all costs – the most I can get is either the pitying looks (“Oh…what a terrible defect!”) or the angry looks (“How dare that hideous creature be seen!”). (Seriously. Sorry for being ugly, but at least I’m not an asshole.)
And, just for shits and giggles, because I look funny, I have people asking what’s wrong. While I try to dodge them without leaving them with the impression that my husband did this to me (which I have been asked), I do generally say something to the effect of, “I have an autoimmune disease and the effect is that I swell up like this.” That seems to give the average stranger all s/he needs to tell me what I need to do to heal myself. Thank God for you, citizen. What have I been messing around with the best doctors in the country for? I certainly will find Jesus/try acupuncture/go to your doctor/just try to be happy with my lot in life/give up meat/lose weight. (Yes, I have been told all of those at one time or another. If you’ve used one of these on me or someone else, consider yourself shamed.)
Not that any other disease has an ‘advantage’ over another, but I thin it would be nice to be able to say I have XXX, which is a condition you have heard of, and about which you are not tempted to make asinine comments. It is also something that you understand will be better and worse from time to time, and that there is no cure, or even a good treatment. You, fictional person at whom I waggle my finger, will be supportive, raise awareness, and help me do the laundry*. Or whatever.
Chronic illness doesn’t have a lot to recommend it. In fact, if it is at all up to you (which it isn’t), I highly suggest you avoid having one. This month I mark the beginning of my 13th year living with HAE, and I wouldn’t wish this on anyone. I’m mindful every day that I don’t have it nearly as bad as some of the other “swell” people, but it’s not much consolation when you are at the hospital – again – because your throat has swelled shut. (Last hospital visit: four months ago and counting!)
I think it would be easier if I had a community. While the folks on the HAE list are great, we really only reach out when we have a question about this little-understood disease. I don’t get to know these people…talk to them…meet their families…be there for them and have them be there for me.
I haven’t been feeling very supported lately when it comes to dealing with my HAE. I know that people try, and I appreciate that, but there is no one that can understand me like another person like me. Interestingly, I had two conversations with people today on unrelated topics who both told me that I could never understand what they had gone through (pregnancy in one, and the love a father has for his long-awaited child in the other) until I had myself been through it. I think that I had a unique understanding of not being able to see their perspective since I live my life surrounded by people who are unable to see mine.
I miss that sense of “I know what you are going through” even though I’ve never had it. I long for that sense of community that a listserv will never give me. I want to stand with my Swell People and say, “Here we are. ”
How does someone get that, when the community doesn’t seem to exist?
I was trying to tell Sarah some of my frustrations on the way home this afternoon (thanks for the ride!), and told her, “I want an a-thon. I want everyone to be aware, and have compassion, and know who I am and what I go through.” She thinks it should be a Swell-A-Thon, where everyone is forced to drink pickle juice until they swell up like pufferfish.
Awesome. This is why I keep her around.
*My dryer’s broken. Of course it decided to crap out after I finally decided to do three weeks worth of laundry. For local readers, I apologize for the funny outfits that I will be wearing until Wednesday, when the repair person comes. If you don’t want to be seen in public with me, I understand.