Sunday, December 20, 2009

Diagnoses and chronic illness

I don't know why I was being private about this. I have been quite self-disclosing on this blog. On Friday, I was diagnosed with psoriatic arthritis. After a lifetime of chronic joint pain that waxes and wanes, bouts with all sorts of unexplained and mysterious ailments and illnesses, I have finally been diagnosed with something. And this time, as opposed to other times, it all makes sense. There is no doubt.

Though it's not a fun diagnosis, it's a progressive disease after all, it's something of a relief to have a name and an explanation for what's "wrong with me." Not knowing has been maddening. Of course, especially since I'm a woman, my health issues have been seen by many as hysterical, crazy, exaggerated, non-existent, cover stories for wanting painkillers, hypochondria, plays for attention, a symptom of borderline personality disorder, manifestations of repressed sexual abuse, you name it (and I haven't named it all).

Unfortunately, a lifetime of being told all of the above becomes internalized, and so it is with some relief that I finally know that it isn't all in my head. Quite frankly, it's been hard to understand why I have ever thought it was all in my head when I walked with a cane at the age of 18, wake up some mornings with my hands swollen up or am unable to sit up without support for nearly an hour, have one foot with nerve damage, one eye with a blind spot from an optic nerve hemorrhage, have seen x-rays of deteriorated joints in my neck, back, knees, hands, and feet. . .the list goes on (and on).

Yes, sometimes I get upset, sometimes I cry, sometimes I feel hopeless. Most of the time I do not. Most of the time I enjoy myself more than I think the average person does. Some of the time I am depressed. And I have been extremely depressed, and yes, hospitalized for it.

Y'know, waking up in screaming pain out of the blue is pretty hard on a person. Knowing that it's real and not being able to do a damned thing about it is frustrating, especially when I want to jump out of bed and get to work. In an odd way, just being crazy just might be easier. If I was "just crazy", it could go away! Some days I can't do some very simple things, and not knowing how long that will last is scary. People who know me are numb to being all that sympathetic, it's tiring for them, and I can understand that, even if it doesn't feel good. I'm not saying this to complain; I'm just saying how it is.

Why am I writing this? It's not just for me. It's for all the people who have chronic health problems. Most of us try very hard to be cheerful, uncomplaining, and stoic.

I used to have a good friend, who passed away, who was much sicker than I. Everyone thought she was so happy-go-lucky, upbeat, a near perfect picture of a sick person who "acted normal." She suffered greatly, and in silence. When we got together, we'd have a great time. We'd play dumb card games, and complain at length, sometimes for hours. We knew it was good to complain, and we'd laugh as we did so, something that others could not understand. We also knew complaining meant very little but relieved a lot and annoyed other people quite a bit. She was better at keeping her mouth shut amongst the healthy than I am. She had also learned to only ask for help from other "non-healthy" people and professionals. Doing so was hard on her, and I don't think anyone knew that. She had a lot of fear, and that was another thing most people did not know.

A big thing that contributed to her death, if not the thing, was not knowing whether a new symptom meant anything or not, and not wanting to yet again inconvenience anyone. She thought she might need to go to the hospital, but the person she asked didn't really want to go just then, so she waited, thinking "perhaps" it wasn't such a big deal. That night, she died. At her funeral, this was never mentioned. In fact, I'm not sure anyone has talked about this out in the open. I'm writing it now, because I've always been sad and angry about what happened, and because I understand it so very well. She couldn't get there on her own. She second-guessed that anything unusual was happening. She figured she probably feel better in the morning, and if not, go to the doctor. She didn't make it. This is the truth, the unspoken truth, about my friend's death. She didn't have to die that night.

It's interesting how chronically ill people have to be so perfectly well-behaved about their problems to be acceptable to the well. The epithet "he never complained" is considered a big compliment. Many of those people who "never complained" did a hell of a lot of complaining, but to strangers. And even those who are complainers, like myself, don't complain most of the time. Those time, other people figure we're fine when we simply are not. The days I enjoyed kayaking this summer? Every single time I went out, I struggled with pain. Did I enjoy myself? Absolutely.

I'm glad I have a diagnosis now, but in the end, it isn't going to change things all that much. I'll still have to deal with my health problems, and the truth is I'm pretty good at dealing with them. And sometimes I'm not. Just like anyone. So, tonight, I've had my say. I'm not sure what my point was, but I got some stuff off my chest. I'm sure there will be some sort of fallout from this, but fuck it. And yeah, I cursed. It's a rarity on this blog, isn't it?

Image note: One option is to turn being ill into performance art, a la (R.I.P) Bob Flanagan. But, his pain journals reveal that he suffered more than his public persona let on.

And lastly, just to be clear, I am not suffering. I am "just" allowing myself to be honest, which in this arena, I think I have been holding back from doing fully. And still, I am holding back some. . .


jmcleod76 said...

Obviously I can't know how you feel, and have no right to state, or imply, how you should or shouldn't feel. Nor do I have more than a few snapshots of what you've been through. Still, I think having a diagnosis is a good thing if it means that medical professionals will be more helpful. At least, I hope they will. I'm sorry to say I don't have the best opinion of medical professionals in general, though people do sometimes surprise me, including, I suppose, medical professionals. At the very least, perhaps help with pain management will be more forthcoming in the future?

I watched Sick last time you mentioned Bob Flanagan on this blog, about a year ago, I think. Fascinating stuff.

Much love.

BitterGrace said...

I think Jaime is right--the good thing about having a diagnosis is that you won't have to jump the hurdle of doubt every time you need medical help.

Good health allows people to be smug, it's true. Whatever the fallout, I think it's a good thing for you to be open and remind us of that.

Anonymous said...

Me, too, Julie. All of it. From the diagnosis of PsA finally after decades of being told nothing was wrong with me to the determination to speak my mind about being "sick." Thank you for speaking my mind publicly.

Julie H. Rose said...

I agree, folks. I'm very glad for the diagnosis. I thought I wrote that in the post. Maybe my sudden expression of downright pissiness overwhelmed that sentiment. And, welcome, "anonymous."