I wonder exactly what does sick look like? I walk with a noticable limp. My stomach protrudes like a woman either stealing a basketball or one about to give birth. I have an odd shape obvious under my shirt and then it dangles to my knees up to a small blue backpack slung over my shoulder. People stare at it wherever I go wondering exactly what it is. My hair is falling out and is getting thin, dry and wispy. The skin on my face is dry. Quarter sized chunks of skin often flake off at the most embarrassing moments. Other spots are beefy red and inflamed often with numerous meth-head like sores. The fact is, people who know me say I actually look a lot better. I wonder what I looked like before.
Yet when I tell people that I am in fact disabled or that I have serious chronic medical conditions, they stare at me in disbelief and say I don't look sick. No your right, I look like a middle aged fat woman who is unkempt and doesn't care a bit about herself. They believe waddle and slowless in my step is from obesity and lack of fitness. And that is exactly how people treat me. With disdain and disgust. The question people often pose to me is why don't you do something to make your life better, why don't you at least go get some exercise. One professional caregiver recently asked me that.
I gently tried to educate her about my diabetes and the complications that some people like me get from diabetes. I have gastroparesis, paralysis of the stomach, that necessitates me needing a feeding tube to get the majority of my calories 24 hours a day to hopefully get me healthier and stabilize my blood sugar. I have neuropathy in my legs (and to a minor extent in my arms), which is inflammation of the nerves, which causes tingling, numbing yet burning pain. It also causes intense muscle spasms in my legs that are so severe that some of my muscles are rock hard and many of my other muscles have atrophied. Sometimes in a 24 hour period I get a cumulative of 2-3 hours of sleep. It means that I spend the majority of my day doing mindless things because I am zombified from pain and lack of sleep. What little physical activity I do, exacerbates my pain and only leads to a vicious cycle of more pain, less sleep and more pain.
This explanation sits well with no one. This professional woman with a Master's degree in Social Work, who should by nature have at least the ability for compassion and empathy, told me that I make excuses for everything. While she is right that lack of exercise does make matters worse, exercising also makes it worse. My quanundrum is that I have been unable to get anyone to listen long enough for me to finish to ask them how do I balance the two so I don't collapse into a heap of sobbing writhing animalness trying to exercise. Just going to physical therapy and doing the simplest mundane things that one does there would do that to me and put me in bed for 2 days. I don't even get the chance to tell them how much I really like swimming, cycling, hiking, volleyball or even dancing.
The problem is only exacerbated because physician's, my records on their lap, believe the same thing. I don't think any of them even bother to look in my records. Some have actually said it to me straight out. I had one tell me until I care about myself, there is nothing they can or will do for me. Or another that told me there is no help for me. So I am untreated for pain. The very few times I am able to get a pain prescription I am treated like a malingerer or a drug addict and the prescription is only given to me to get me out of their office. I hoard those pills for the very very worst of days and 30 pills can last me 6 months because I am so afraid I will never get another.
I wonder what it is I have to do to look "sick". What it is I have to do to get the care and help I need. Recently, out of desperation, some very scary thoughts have come through my head. It shouldn't have to be this way. I shouldn't be judged by the way I look or not look. I should be trusted when I say I hurt or that I am sick and appropriately treated not disrespected and blatantly at times abused.
I think from now on, I am just going to lie when people ask me if I exercise or if I eat healthy or whatever it is they want to hear if it means I get what I need. Or maybe not. I still at least have my dignity.