I flew out to Indiana for Gen Con yesterday. It’s a silly thing, but having a context in which to put all the weird phenomena I experience just makes it all more bearable for me. I’ve noticed before that I sleep very well on planes. Even when I’ve had a relatively good night’s rest before traveling, I pass out shortly after takeoff. Well, now I have an idea why. Two things happen when I fly – first, the reduced atmospheric pressure causes my blood pressure to rise so I can breathe better, and second, the oxygen concentration is lower, so less is being forced into my cells. I think that I just become hypoxic (low on oxygen, like when you’re drowning) when I fly and I actually can’t stay awake. I wonder if this will improve when I start hyperbaric therapy?
I cannot begin to describe how much knowing that I have a real physical problem has changed the world for me. Until I had a real answer, I truly thought that a lot of my symptoms were character flaws. I slept a lot – that must have meant I was lazy. I had random emotional breakdowns – that must have meant I was a spoiled baby. I stopped working when I was 23 – that must have meant I had no ambition. I went to doctors a lot, yet none had been able to find anything medically wrong with me – that must have meant I was just looking for attention and I was a spoiled suburban housewife. I know this seems harsh, but this is how I saw myself. While I might have come to this conclusion without any outside influence, everyday interactions with other people reinforced my negative self-image.
The absolute worst comment I heard (and I heard it frequently) is “You don’t look sick.” Like I was making it up. I think I understand why well-meaning people say this. I mentioned before that a friend told me that most people get their self-esteem from their looks. Now that I’ve had time to think about it, I realized that the well-meaning crowd was just trying to boost my self-esteem from the source that most people derive theirs from. That kind of comment did nothing for me, as my interpretation of self-worth is achievement based. The thing is, there is another crowd who tried to insist that my problems were psychosomatic. They didn’t believe I was really sick, and they thought that if I would just get off my lazy ass and get a job, or if I would just take an antidepressant, I’d feel a sense of purpose and maybe I wouldn’t be so sick anymore. Even some well-meaning people who believed my illness was real were operating under the notion that if I just had a positive attitude, I’d get better. I blame to woman who wrote “The Secret.” That book has to be one of the most damaging things you can inflict on a sick person, and it’s been very popular. I see why – I mean, if you can convince yourself that you are making up your illness, then it’s within your control to get rid of it by simply disbelieving it when you are ready to be well. I was given this book by a well-meaning person. What that book said to me is that I am to blame for my illness, that I was drawing illness to myself, and if I would just think positively I would draw health to myself. That is a load of crap. I suspect she would argue that magical/positive thinking is what brought me to my answer, but I’m telling you, I was not thinking positively at all when it finally came to me. I am asking anyone who reads this, please, please be careful about telling someone who is chronically ill with no medical explanation that they look good. At best, it offers no comfort, and at worst, it makes the person feel like you don’t believe her.
It was also the medical establishment that wrecked my self-image. Any doctor I saw more than just a few times had a file for me the size of an encyclopedia by the time we had to part ways. When something came up that seemed unusual, the doctors would run blood tests or take x-rays, and when they came back “normal” or only moderately off, the doctors would brush off my symptoms. They’d say things like “some people just have a lower energy level and need more sleep than others” or “your chest pain is probably muscular, nothing to worry about” or “how about I give you a prescription for an anti-depressant”. They seemed to miss the fact that these symptoms were new, not normal for me. The doctors who understood that the symptoms were new often attributed them to aging. I’m thirty now, and I was in my early to mid twenties when I was given this line. Aging was not the appropriate cause of my problems. The most painful was the offer for antidepressants. I felt like the doctors were telling me it was all in my head. Dr B was able to give me a better perspective on that approach. He said that antidepressants are often a doctor’s way of saying that he can’t handle your pain – the doctor wants to numb you and move on. This kind of treatment led me to believe that the doctors also thought I was making all this up. It is this type of experience that drives the chronically ill to suicide. I felt like I was a bad person, just trying to get attention, and the doctors seemed to agree with me. I felt like I didn’t deserve to live.
Another issue with the medical field was misinterpretation of my symptoms. Doctors seemed to get carried away with their own sense of superior medical knowledge, and they could not comprehend when something didn’t go as they expected. When I originally presented with breathing trouble, doctors went first to the most common cause: asthma. When I told them the drugs weren’t working, they tried to tell me that I wasn’t giving the drugs enough time. I figure if I’ve had enough time to develop bad side effects, I’ve had enough time to start getting the benefits of the drugs. The doctors hung on to the asthma diagnosis like their lives depended on it. There is a similar problem with my thyroid medication – when the dose is too high, it exacerbates my heart condition. I tried to argue that I don’t like how I feel when my dose is too high, and the numbers weren’t indicative of that. Since I have concurrent autoimmune disease and I present with fatigue, C and even my wonderful Dr B insisted that I needed to take enough of the hormone to make my numbers look good. C suggested that I wasn’t giving it enough time to improve my energy. I guess it did serve to prove that my thyroid is not the cause of my fatigue. One more interesting misinterpretation came from Dr B himself. He pays way more attention to me than I realized at first (a good thing, in the end, but it was unnerving when he revealed this fact). He would constantly talk to me about how I need to manage my stress because he saw physical signs that I hadn’t even noticed, like the fact that I often breathed heavily and sat in a hunched position. I eventually snapped and told him that I didn’t want to hear anymore about stress, that I handled stress just fine, thankyouverymuch. Rather than being signs of stress, these were actually signs of distress.
So the question becomes, “How on earth did I manage to persevere and actually get to a diagnosis in the face of the obstacles in front of me?” This is going to sound incredibly sappy, sentimental, and all sorts of other things I normally react to with nausea, but it was simply that someone believed me. More than one someone believed me, and these people saved my life. I’m not aiming to embarrass anyone here, but I’m going to call you out publicly. Vickie, whom I’ve known since high school, sent me to the practice where Dr B works when she realized what sort of distress I was in. My father, with whom I have had a very rough relationship, heard and recognized my symptoms from his own experience and pressed to me to have my heart looked at. Harriett, Lane, Bree and my therapist, J, regularly talked me through the rough patches when I really wanted to give up. Both of my Julies weren’t put off by my illness and made an effort to include me and make me feel like they still wanted to be around me. My husband Michael recognized that my illness was real and was supportive of my need to take care of myself, even when I was frustrated that I had to focus so much on my own health. Dr R (who does my adjustments) tattled on me when I wasn’t telling Dr B enough about when things started to go wrong (I was cranky about it at first, but now I’m grateful). Many of my other friends were able to supply other minor support roles throughout my life. Most important, though, is Dr B. He believed all of my symptoms were real, even when I stopped believing so myself. He was willing to admit when he didn’t know something, and he would call on others for help. He treated me as if I were intelligent, discussing his thought process and why we were trying each treatment in great detail. When the treatments had unexpected results, he didn’t assume that I was at fault. By recognizing my abilities and including me in the process, he helped me find my own answer, and he’s currently working on helping me prove it.
I realize as I write this that I have been guilty of some of the same sorts of interpretation errors that my doctors have succumbed to. In particular, I have misinterpreted my behavior, leading to a misdiagnosis of my character quality. In light of my new information, it’s a little harder to adhere to the definition of an attention-seeking, babyish, spoiled suburban housewife. By no means am I perfect, but I do want to write a more positive definition of myself. I’ll start with what I know:
- I am generous. If I see an opportunity to help someone else, I will do it without hesitation. At the same time, I am not so foolish as to enable someone who will not help himself.
- I am reliable. I have demonstrated more than once that I am the friend to call in the middle of the night when something bad has happened. What’s more, I am happy to be available for such times.
- I am (at least to some degree) selfless. I actually enjoy taking care of others (credit to Dr B for pointing this out), whether it’s feeding friends at a dinner party or spending time with a friend who is dying of cancer. And we can’t forget the kittens.
- I’m pretty intelligent. I don’t claim to be a rocket scientist, but come on, that medical diagnosis was not an easy catch.
If you have anything else you’d like to add, by all means, let me know. I’d welcome feedback about character flaws I need to work on as well.
Remember the book I decided to write? Well, now I have more direction and I know what I am going to do with it. It is the psychosocial aspect of chronic invisible diseases (especially those with no known cause or diagnosis) that I want to address. I want other people with chronic disease to know they aren’t alone. I want the general public to know how the things they say and do affect these sick people. Finally, I want doctors to take a lesson in trusting their patients.
Right now, I have a gaming convention to return to. As soon as I get home, though, I’ll get on that book thing. 🙂