11:29 a.m. - 2004-01-24
Rant about illness
Something has been bugging me for awhile now, and I need to get it off my chest. I think this won't be a pleasant and happy entry, but it will make me feel better. And I promise that when I'm done, you'll never have to hear about it again, ok?

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A couple of nights ago, Bruce and I were watching a PBS special on Alzheimer's disease. It was very distressing to me, watching people who had been wonderful, productive human beings slowly deteriorate into a childlike state, and then into vegetables. Hearing them discuss their disease in the early stages was horrifying, as they described how they knew their brain wasn�t functioning quite right, how they just couldn�t mentally function.

�It scares me.� I said to Bruce. �You know I feel that way a lot. I just feel like I can�t think straight a lot of the time. I�m really worried my lupus and epilepsy are causing all this brain damage and I�m going to wind up like these people, just slowly deteriorating.�

Bruce looked straight ahead. �I think you�ll be ok.� He sounded tense.

I felt sort of brushed off, or like he just didn�t want to think about it, so last night when he got home we had a long talk. We talked about everything to do with my being ill, and he confessed that he does think about it, all the time. At one point he got very teary, and talked about how he felt �the numbering of our days� and how he wants to take my longed for trip to England in the next couple of years, because he�s afraid I�m going to physically lose it far earlier than most people.

It made me very teary, too. And it really brought to the surface something that has been crawling under my skin for ages now.

I am sick of pretending that I feel perfectly fine and healthy when, in fact, I feel like crap most of the time.

Ever since I was diagnosed at the age of 23 I have been trying to put a brave face on having lupus. Despite the diagnosing doctor telling me that, given the severity of my case, I shouldn�t expect to live more than a couple of years (later this year I will celebrate my 20th anniversary of still being alive � so much for the predictive powers of rheumatologists) I have been trying to downplay this illness, like it doesn�t affect me at all. No, sir, it�s not serious, just a minor inconvenience!! I can do anything anyone else can do, despite feeling like unleashed hell!! This disease won�t get me down!! I�m not going to be one of those whiney boring malingering sick people!! No sirree!!!

This has been reinforced by the fact that most people find talking about illness boring, or frightening, or both. I just don�t want to bother most of my friends with this, when I know they are leading normal healthy lives and would undoubtedly rather talk about vintage clothes or the latest CD they�ve bought or how despicable George Dubya is. I know they can�t relate to it at all. I sense people inwardly rolling their eyes when I mention it, so I just don�t talk about it, even when I�m having a serious flare up. And I push myself way too hard, because I don�t want to admit that I don�t feel well enough to join in various activities.

Unfortunately all this has had a boomerang effect. I don�t want to deal with people�s reactions to my illness. So I don�t tell people I�m sick, and I pretend everything is normal. So everyone thinks that things are normal, and so, when I occasionally do mention being sick I get treated like a hypochondriac or a malingerer or like it�s no big deal. I have several friends who openly disbelieve that I have lupus �because you just seem so healthy! You must have been misdiagnosed!� and another friend who recently told me she didn�t realize how serious lupus is. She thought it was �just one of those things you live with. Like psoriasis.�

Ok, folks, it�s time to set the record straight. It ain�t like psoriasis. It�s a disease of the auto-immune system, where the body no longer recognizes its connective tissues and starts attacking them the way it would attack a disease. It�s a very unpredictable illness that easily could kill me, and has often tried to over the years. And I just haven�t told people all about it because, quite frankly, I think it just bores them.

But it doesn�t bore me. It scares me shitless, every day of every week of every year of my life.

Or sometimes I get reactions that are even worse than the eye rolling. Every once in awhile I meet someone who really is a hypochondriac malingerer. These people see me as a comrade in arms, and gleefully tell me about their terrible struggle with hangnails. Or how about the woman who told me I should get a disability pass so that I could ride the subway for free � after all, she had gotten one because of her intermittent carpal tunnel syndrome.

Not that I�m downplaying carpal tunnel syndrome � my Dad and Mom both have it, and it�s terrible. But to get a disability pass for it? It seemed sort of abusive of the system to me. It was mute point however, since at that point I couldn�t ride the subway at all, period. My seizures weren�t responding to medications and my neurologist was afraid I would have one and fall off the platform into the path of an oncoming train.

Alternately I get another type of reaction, what I think of as the �New Age � Louise Hay � You must subconsciously hate yourself and therefore your body is going wacko � let�s blame the patient for her illness � you�d get better if you�d only meditate and gaze at the colour turquoise� reaction.

This one really galls me. I do believe very strongly in the mind/body connection. It�s probably the reason I�m still alive. But frankly, folks, there are a lot of people who can�t stand themselves who are perfectly healthy. And I also have been blessed to know several people who were pinnacles of self-love and self esteem who were desperately ill.

It�s a fact, folks � sometimes people just get sick, and it has very little to do with their mental state. And continuing to be sick, or even dying, should not be looked upon as a fault of the sick person, the result of a mental disorder that they somehow could not correct. Sometimes bodies go kerflewy, or they just wear out. Sometimes they just fail altogether. And suggesting that this is something the patient brought upon themselves is often just plain insensitive and insulting.

And there�s also the �if I ignore my friend and her illness they will go away� reaction. My mother used to talk about her terminally ill patients whose friends abandoned them. I never could quite believe that anyone would be so self-centered and cruel until I started working as a medical secretary. Over and over patients would tell me stories about how they got sick and their friends didn�t want to hang out with them anymore. My friend Joh told me about being the only person at his dying wife�s bedside, when only a year before she had been a social butterfly with dozens of friends.

And the reason my old friend Meg is now my ex-friend? Because when our mutual art buddy Diane was dying of cancer, Meg never once, in a year, went to visit her. And not only that, but she ignored my repeated requests for Diane�s address and phone number. So I never got to see Diane either.

I know hanging around with a sick person isn�t fun. And I know that it pushes a lot of people�s buttons and brings up all their feelings of mortality. But �get over it!!! Your friends need you!

So I�ve decided I�m really tired of keeping this under wraps. I don�t give a damn how bored people are or how un-fun I am, or if people think I�m malingering or that I hate myself. Here�s where it stands for me. Here�s how bad it gets.

Although I usually have what�s considered a mild case of lupus, when it flares up, it�s very serious. And it hurts, and I am not much fun. This past summer, for example, I dealt with a 17 pound weight loss, vasculitis (the disease attacks the blood vessels), continual fevers, various itchy scaly rashes, seizures, swollen glands, flu like symptoms, fatigue (we�re not talking just tired here. We�re talking going to bed at 3 in the afternoon.), mental confusion and migraine headaches, hair loss (but only on one side! Who says this disease doesn�t have a sense of humor?), a nightly butterfly rash, pleuritis (an inflammation of the connective tissue in the lungs), and difficulty getting out of bed and doing my work because my joints hurt so badly.

Granted, this is during a flare up. But even on a �normal� day I take several baths, because otherwise I just can�t keep my joints moving. Not to mention the general fatigue, and other just irritating aches and pains.

And except for Bruce, I have basically gone it alone. He is the only person who has seen me struggling along, dealing with all these symptoms and more. He has nursed me through more cases of pneumonia than I can count, and at the start of our relationship, when my kidneys were punting out, he insisted I move in with him so he could make sure I got taken care of.

You know how to tell if you�re with an amazing guy? When he takes care of you through a serious illness without a word of complaint. When he�s willing to consider a visit to an emergency room a �date�.

I may have mentioned before that my mom was a terminal care nurse, so you would think that she�d have been helpful. But no, a month after I was diagnosed a lupus patient she was taking care of suddenly died of kidney failure, and my mother just couldn�t handle it. From that day on, she has never been able to discuss this illness. No support there. So at the age of 23 I was left managing a disease that was attacking my kidneys, joints, lungs, reproductive organs, skin�..you name it.

And in a horrible twist of fate, she herself was diagnosed with lupus/rheumatoid arthritis this past year. I feel terrible about it, and I know she has a lot of guilt. So I�m trying to give her the attention and understanding I wish I had had from her.

So what do I want from people? What am I expecting from this long and hysterical rant? Nothing. Honestly, I am not expecting big long outpourings of sympathy or get well cards or anything. You don�t have to try and help, or talk about it at all. I just would like people to understand that even though I try to act all cheery and happy, I am not, on a regular basis, either. So if I occasionally whine about having a rash or not feeling good, please don�t just roll your eyes and think what a whiney hypochondriac I am. I�m not a whiney hypochondriac. But I don�t want to be a boring sick person either. I just want to get this off my chest.

Thank you for listening. Tomorrow this station will return to its regularly scheduled programming.

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