It's a scary experience to be told that something is going to be "wrong" with you for the rest of your life; it doesn't matter if it's a life long diagnosis of depression or of physical pain, it's still life changing to hear that you will never be in a "normal" state of health again.
As a recent high school graduate, I wanted to get as far away from my family as I could. I applied and was accepted to the University at Buffalo. About halfway through the year, I stood up from my computer chair and started to cross the room. I was suddenly hit with waves of extreme pain that radiated from my back to my torso and down my legs; it felt like I was being stabbed repeatedly. I fell to the ground in pain and could barely bring myself to breathe, the pain was so bad. In about 30 minutes to an hour the pain receded but was still present. I called the health hotline on campus and was instructed to see a doctor immediately. I did. I was told I had sciatica, a fairly common occurrence. They prescribed me muscle relaxers and Vicodin and told me that it would go away "in time", but to see a doctor again if it did not subside.
I waited patiently for over a month in pain. It in no way got less painful or intense, and I was still occasionally hit with waves of extreme pain that would leave me crippled and stuck in place for hours at a time. I saw a different doctor and was told the same thing, and given refills of the same medication. When the school year ended, I was still in pain. It had subsided from sharp pain into a deep, burning pain in my left leg and lower back. I returned home to take care of my sick mother, feeling extremely miserable. I finally asked my mother to take me to our family physician. I had high hopes -- surely my physician would be able to figure out what was going on. She wasn't some random doctor I had managed to make an appointment with, she had worked with me for years. She came into the room and we discussed my symptoms and she said the same exact thing doctors had been saying all along.
This kind of brings me to my first point about having a chronic illness - sometimes the most frightening part is not knowing what's wrong with you. You start trying to self diagnose, which does absolutely no good. You're always going to assume it's the worst thing possible because you're scared. I had seen three doctors and none of them had any idea what was going on, or, more importantly, any interest in figuring out what was causing my pain.
That doctor eventually stopped accepting our insurance, and I found myself in yet another doctor's office, not having any real hope that he would show any more initiative than the others. He came in and we discussed my symptoms. He started out by saying he would refill my prescriptions, and my heart began to sink just a little. Then he told me he also wanted to schedule me for an MRI. He wanted to take a look at my back and see if there was anything there. This was the first time a doctor had even discussed doing any sort of test on me or my back, and I was ecstatic, but also quite scared. Suddenly it would no longer be an unknown source of pain; I would know one way or another what was wrong with me.
Tests are a pretty frightening aspect of being diagnosed with a chronic illness. Whether it's taking blood or scanning your body, your mind tends to exaggerate things around you. The people performing the test are too nice - was that a look of pity you just saw them shoot you? Every noise is overly loud. The hum of the MRI machine was the least of my worries; in such an enclosed space I could hear my own breath and feel it on my face. I had to focus hard to keep it together and not move.
I had scheduled a follow up appointment with my doctor in two weeks. When I finally saw him, he pinned up my MRIs and he told me what we were looking at. He hesitantly said "I hate to say this to someone so young, but these are indicators of degenerative disc disease". What I remember most about our conversation with that is how much he seemed to emphasize how young I was - 19 years old with degenerative arthritis of the spine. He repeated that he hated diagnosing me with this, and especially hated prescribing me arthritis medication.
This actually brings me to another point about having a chronic illness - if it's chronic, those pills aren't to cure what's wrong with you. They're to alleviate the symptoms, and they will need to be taken for the rest of your life. On top of this, I'm going to tell you right now, sometimes the medication itself has negative effects on your health. When I take my arthritis medication daily as prescribed, there is a noticeable drop in my short term memory. I will take my medication, and in a few hours, not remember if I took it. The Vicodin makes me extremely sick at times; sometimes I will spend 24+ hours in the bathroom, dry heaving into the toilet and crying. It's absolutely awful.
Although I didn't realize it when I was diagnosed, having a chronic illness would impact the way I lived drastically. I have to be sure to keep up my core strength with stretches or I risk seriously throwing my spine out of place. I am not supposed to lift heavy things for the same reason. I can never join the military because of this diagnosis. There is a very real possibility that sometime in the future I will require surgery to my back, and even with surgery, there is still a possibility that as I grow older, I may become crippled. However, I think hands down the most difficult fact for me to come to terms with is the risk I would be taking with becoming pregnant. Not only can the added weight put me into extreme pain for months of the pregnancy, there is also a chance that my spine will simply not be able to support the weight of a child at all, and that I will become paralyzed.
The thing about chronic illness is that you either learn to live with the pain, or you don't. The ones that don't destroy themselves; my sister had an extreme case of bipolar disorder that nothing helped and she drank and overdosed herself into the grave at the age of 24.
The ones that do can still go on to lead a life full of adventure and happiness - I have a career in Quality Assurance, own a house and a car, have many loving friends and have managed to capture the eye of an extremely kind and amazing man, at least for the moment.
Something my abusive ex once told me is that no one else would be willing to take care of me when I grew older and crippled; but I think that even if I were crippled, that wouldn't be true. If I can endure years of relentless pain, then I can accomplish anything, and that includes taking care of myself when I grow older and crippled. In the words of Homer,
Be strong saith my heart;
I am a solider;
I have seen worse sights than this.
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