Having a chronic illness means that I do a lot of waiting. Waiting to feel better after long periods of feeling ill, waiting for pain to go away, waiting in line to fill prescriptions (and then having to go back when I count the pills at home and realize I didn't get enough), waiting for blood tests and MRIs, and most importantly waiting for the results of my latest scans.
Many of my friends and family members tell me that I must have a lot of patience, especially to get through the last few years without depression. Often people tell my how calm I appear in the face of my illness. Indeed I do not often vocalize my frustration for having to wait. It would thus be completely correct for people to comment on how I deal with my chronic disease in relation to others who are often either very curious or very ignorant and arrogant. But on the inside I am anything but patient. For example, between my latest MRI and getting the results on December 8 I have a ten day wait. On the inside the butterflies have formed a tornado in my stomach. I am silently freaking out because the results I am waiting for will determine how I will proceed with treatment, yet my friends can not see the worry I try so hard to keep from them. This illness affects enough of my life. Why should I let it control the social life which I hardly enjoy anymore because I am often to tired to get out? In the end I survive the wait not because I want to or because I am patient enough to do so but because there is nothing else I can do. It's not as if I have a time turner like Hermione Granger and can magically jump forwards ten days. Just because I wait doesn't mean I want to.
The patience of other people is something that sometimes really bothers me. Having to explain to people what a bone infection is can be infuriating because they might not grasp how debilitating a chronic illness can be. In the summer I went to a party and a friend asked me how I was faring. I answered truthfully, that I was doing badly. His response "Still?" People assume that because I am being treated that I am going to get better quickly while the reality of it is that the longer you have a chronic bone infection the harder (and more time consuming) it is to get rid of. There have been people who simply refuse to believe that I am ill. At times I feel that many people in my community seem to think that if a person does not have cancer or some other very well know illness that whatever they do have is not serious. I have had fellow students and doctors tell me that I am faking everything to get attention (not that you can fake pus draining from your leg) and TAs role their eyes when I ask for extensions. People often assume that being ill means being in the hospital attached to IVs, monitors, and a million other things while being examined by doctors round the clock, but their are legions of people who walk in crowds everyday who are chronically ill. Nobody realizes it because very few people talk about it. The subject is almost taboo. Yet when you look closely you can tell who has the tell tale moons under their eyes, ghostly pallor, and gaunt cheeks. With other people it is impossible to tell from their physical appearance. It is hard to watch your friends and fellow students progress with there lives and make plans for the future while you are stuck at home, waiting for doctors appointments and unable to plan anything major because you never know how you will feel. It is especially disheartening when your friends include you in an activity yet speed up to the point were you lag behind and then berate you for being slow. Because the bone infection is in my leg I can not walk very fast but I assure you that if you slow down for me we can still have fun together. My point is that chronic illnesses can manifest in different ways. When people are unwilling to be patient with me it hurts because I feel that I am not longer seen as a worthwhile member of society while I have so much love and care and kindness to give. If only people would talk about it...
I get angry with people who try to help. Foolish isn't it? People go out of there way to be kind to me and I thank them while on the inside I seeth at their audacity. It is not that the help offered isn't appreciated but when people who have never had a serious health crisis offer help it is hard for them to give the kind of help I need. I can not blame these people. I almost envy them for being so naive and ignorant about chronic illnesses. They go about their lives feeling good (physically and mentally) for helping others while I feel shitty for not appreciating them. I have friends who want something to be wrong with them so that they are interesting and get attention but I hate it. I want people to ask me how I am so that I can tell them about all the cool things I get to do and let them hear the music I learned to play on my piano and even tell them about the books I have read. I want to be normal and not have people ask me how I am as a way to inquire about my health. I don't want help because it reminds me of how ill I so often feel.
I am not a very patient patient. I get upset with arrogant doctors who clearly know nothing about chronic osteomyelitis.Yet I do feel that having learned to distract myself with fun things is part of becoming patient, as well as resolving the anger I feel towards being ill. Who or what am I angry at? I am not sure.. maybe just the universe for the lot I got in life. I might never get rid of this infection but if I can accept that and am ok with continuing some form of treatment for the rest of my life which keeps my were I am at right now I think that I would be able to accept that. Maybe acceptance is what patience is?
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