Among the many difficult things that come with a chronic illness, especially one that carries such a stigma, is trying to get people to understand what it's like. Because it's so challenging on so many levels.Things I would never have thought of when I was well.
The financial stress alone is almost unbearable. I never, ever thought that I'd be on food stamps much less twice going to use my food stamp card and get told by the checker that I don't have enough money on it to purchase the food. It's simply humiliating. I also never, ever thought I'd have to go without needed medical procedures or that buying a pair of shoes would cause me to fall short on rent. A freakin pair of shoes for god's sake!!!
I also never thought I'd experience the depth of loneliness, isolation, despair, fear, and the worst, deepest, darkest depression that has been going on since June. I can't tolerate antidepressants so I'm gritting it out day by day and sometimes minute by minute. My last hope is Ketamine but I need to see my M.E. doctor in person for the prescription. But for those things I need money.
Likewise, I have come to realize that many people are deeply disturbed by my continuing illness; they want to help but also need to reassure themselves that disasters like disease can be avoided and, if necessary, easily remedied. It's hard to swallow the fact that we have little or no say over the extent and timing of our illnesses.
Sickness is seen not only a breakdown of health, but a personal failure, which explains why so many people feel so guilty and ashamed--or angry at anyone who intimates they have done something wrong. From quotes on the web by Hillary Duff:
When symptoms persist and illness becomes chronic, we often find fault with the victim, we call it a lack of will power, a desire for attention, an unwillingness to work or change, rather than question the hidden assumption that it is within our power as human beings to overcome sickness and, in fact, it is our job to do so.
So many times I've heard "if you change your thinking you'll get better" or "the mind is a powerful thing and if you put your mind to it you'll get better". I so wish that were true. God knows I've tried.
In a perversion of recent discoveries of body-mind unity, self-help books encourage sick people to cultivate positive attitudes--faith, hope, laughter, self-love, and a fighting spirit--to overcome their diseases. As a result, many sick people are shamed by friends, family, or even their healers into thinking they are sick because they lack these "healthy" attitudes, even though illnesses often accompany critical turning points in our lives, when it is necessary to withdraw, reflect, sorrow, and surrender, in order to make necessary changes.
"In health," wrote Virginia Woolf, "the general pretense must be kept up and the effort renewed--to communicate, to civilize, to share, to cultivate the desert, educate the native, to work together by day and by night...In illness this make-believe ceases...We cease to be soldiers in the army of the upright, we become deserters. They march to battle. We float with the sticks on the stream, helter-skelter with the dead leaves on the lawn, irresponsible and disinterested and able, perhaps for the first time in years, to look round, to look up--to look, for example, at the sky."When I moved here almost 2 years ago I had hope that I would make friends, save some money, have a connection with housemates, and things would get better.
They aren't. In fact it's gotten worse in ways I didn't anticipate and in ways I couldn't imagine.
I'm tired of bearing all of this by myself. I've had to drive myself to and from painful medical procedures and then have to climb the stairs to my room where I stay and deal with the after effects. Tomorrow I have to have a steroid injection into my big toe because I have a bunion and bone spur causing pain and swelling. The shot goes into the bone. The last time I had it I almost passed out from the pain. I'm delaying getting my tooth pulled, a colonoscopy, and endoscopy because they all require a driver and someone to stay with me for a few hours after.
When I look at my future my depression deepens to a point that's simply scary. I do not want to live in a loud, roach infested, moldy, chemically laden apartment that low income people end up in. In fact I refuse to do that.
Forget dating. I read profiles of people and am struck by how much is based on activity.
Friends? Not with healthy people unless they are pretty special.
Increased income? Haha.
A sense of home and community? Doesn't look like that's going to happen either. I desperately want to live by myself so I at least don't have to waste energy on housemates.
Is there any quality of life left? I'm still searching. My living situation is killing my spirit and soul. It's complicated and too lengthy to go into here but trust me...
So I don't know what to expect from life anymore. I don't see anything improving. I'm developing joint pain in my knees,toes, hip, my back is a complete disaster but I can't get my doctor to do a thing about it, I have a tooth that needs to be pulled, a likely root canal on another, and a cavity that has gone untreated since Sept 2013.
If someone would have told me as I was being congratulated by my dissertation committee after defending my dissertation (and told I needed to publish it) that I'd be writing a post like this I would have laughed because I was on my way and was finally getting everything I'd ever dreamed of--a teaching position, pressure to publish with the right connections, a growing practice, and more.
My energy right now is taken up by grocery shopping, medical appointments, dealing with housemates, medical bills, taking my lemon of a van to various mechanics. I don't have anything left over anymore. I don't have the energy to fight internal or external battles.
I need some things to change. Desperately. And soon. But I do not see that happening.
I feel as if I've entered a new universe. One I don't want to be in but can't leave.