What About People Who Want a Cure?

When discussing the Social Model of Disability, one of the questions that comes up is: what about those people who actually do want a cure, or would benefit from one. What about the people with chronic pain, with terminal illnesses, or with degenerative conditions that do interfere with a person’s ability to function, regardless of accommodations? This very question occasionally leads to clashes within the disability community. Some believe that people with chronic illnesses should not be included under the definition of Disabled People. Still others use the existence of such people to push the Medical Model rather than the Social one.

I’ve seen the argument before that chronically ill people are not disabled in the same way as people with more traditionally defined disabilities like paralysis, hearing loss, vision loss, lack of mobility, and so forth and so forth, because they don’t perform disability the same way as others. The article I read, went on to describe examples of how their white cane, their dark glasses, their inability to navigate unfamiliar environments, even their service dog, all added to the disability performance. With a chronically ill person however, they argued, there is no performance. The ill person can maintain privacy or invisibility, thus not being treated the same way that “real” disabled people are. That chronically ill people are not disabled or even impaired, but rather sick.

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What About People Who Want a Cure?
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My future is pain.

What does my future hold?

For many people this is a question of awe and wonder. It’s exciting and even inspiring to think about the future. What could the future hold. What will my mark on the world be. What amazing things can I do with my time. Then there are things like bucket lists, dream vacations, a certain thing someone wants to do before they die, we could go on. I am sure you get the picture.

While I don’t know everything about my future, and it would be disingenuous to say as much, I do know this. I know that my future holds pain. My future will always hold pain and suffering. I get to live the rest of my life (barring any sudden drastic leaps in science, technology, and medicine) in pain. In daily pain. Not only physical but mental and emotional pain.

My future is pain. Of course as I said before I don’t know what the future holds, no one can predict the future or often times even have the faintest idea of what will and will not happen. However I do know that whatever happens to me, wherever life takes me however long that is, and no matter what gets done or doesn’t. My future will have pain in some aspect or another. Daily pain.

I have daily physical pain, from the Fibro/ME catch all diagnosis for you have pain and we don’t know why. To my more specific things like the degeneration in my knees, chondromalacia patella, patella femoral joint degeneration, osteoarthritis. Two knee surgeries later and being told I need new knees, but that I will have to wait until I am older. To the bursitis in my right shoulder from cane use because of my fucked up knees. My carpel tunnel which I have already had one surgery for, making my main hobbies and interests already harder. Using my arms and hands and having to take constant breaks while painting, or doing models, or even gaming. My dowagers hump, which means my spine and neck are just always fucked, no matter how good I slept, if I use my neck pillow. I do daily at home Physical Therapy because that is all I can do to give my neck/shoulders/spine some relief and the change at not getting so tense and bound up that my whole day is rolling with a disadvantage.

To the pain that is my entire body, revolting at the fact we are still existing. Just every single joint in my entire body hurting, pulsing with pain or even just screaming at me while I am doing literally nothing. A bumped arm or toe that can send me into bed for 3 hours in excruciating pain. If not from the pain from the bump/wound, then the crying and bawling that happens because the pain in so intense for however long, then I have to lie down anyway because I have a migraine. The fact that water from a shower head hurts like hundreds of tiny stabs and punches all over me. I also have nerve pain and damage on the right side of my body from having Shingles outbreaks at least 6 or 7 times within a few years, and another more recently. Nerve pain is really fun like electric shocks and a very stingy deep pain that is miserable and doesn’t take well to anything I have tried.

Pain also gives me amazing nausea, so I am either nauseated because of body pains, or maybe because I haven’t eaten in so long because of being nauseated, or maybe I am nauseated because of eating. Then when I do eat I often get more pain because of eating. I have a sliding hiatal hernia, and refractory GERD. I also already have esophageal damage, not only from being a former bulimic but also because it took a full year of tests and procedures to find out what was making me get sick and vomit almost every single day for multiple years. IBS is also super fun and causes me all kinds of pain and discomfort, which also ties into my anxiety, since a LOT of people with anxiety disorders also have IBS.

My own disabilities make me more disabled in so many cases. How hecking effed is that?

I also have daily emotional and mental pain. The anxiety alone, making me tense adding to my physical pain. The anxiety is about anything, and everything. The bouts of agoraphobia that cause me more stress, mental pain and anguish even just thinking about leaving my house. I have nightmares at least half of the days of the week. This adds more stress, anxiety, maybe even triggers my PTSD. All of this adding more to my mental state, emotional pain and then all making my physical pain worse. It’s this constant swirling mass of things that keep feeding each other. Physical pain adding to my depression, the depression making me less likely to do things I enjoy which adds to not only making the depression worse but my pain as well.

PTSD is it’s own beast as well with the fact that flashback can also trigger body memories and pains associated with that. Or even just the stress of the nightmares, flashbacks, the intrusive thoughts which make me tense up. I deal with muscle spasms on the daily as well be it from pain, tension, stress, or just more body weirdness that doesn’t have a name and probably just gets lumped into my Fibro Dx. Which doctors have told me is a catch all for “you have any number of these symptoms and widespread pain and we have no idea why”.

Constant anxiety over how much I am being a burden to everyone I care about. Constant anxiety about the fact I have been told I talk too much about my disabilities. Can’t I just be happy? Can’t I just not talk about things that affect my daily life. The anxiety about finding new doctors and trying to access new pain treatments, or new options in general. Trying to seek out help for my bodily pain which adds to my anxiety more because I have to find new doctors, make appointments, do that first meeting. Bring all my medical history over and hope they even glance at it rather than just at me. Then these things just add to my depression more when appointments with doctors go terribly, either because they can’t help me or because of the more sinister shaming that they love to do so much. Or maybe another test is “normal” and we are back to square one.

Another doctor dismissing me with “go diet and exercise”. Another addition to my daily shame for existing as a disabled person, for existing while fat. Another addition to my emotional pain, the distress, the hopelessness, my depression, which in turn swirls and adds to everything else. Knowing that my future is pain, and will contain pain is hard. It is hard to keep wanting to go when I know this for a fact will a part of my daily life. Sure I don’t know what else my life will hold, but I do know it will be all through this lens of pain. A large spiky bubble that is my constant companion. Ouch, pain here, ouch pangs of sadness here, fuck I just got triggered, ouch more emotional pain, more crying, crap now I have a migraine. A cycle that is not always the same, but is constant none the less.

Every single day of the rest of my life will be in pain, and I don’t know how I feel about that. It makes living hard, it makes gaining inertia hard, makes having fun or even a “not shit day” hard. It makes everything harder and I am tired, and I want a break.

My future is pain.

Pain is my Reality

I think what people fail to comprehend is that I exist in a state of constant pain. I literally cannot remember what it feels like to not be in pain, assuming such a moment ever existed for me. I even experience pain in my dreams.

When I say that I am doing well, or that I am feeling good, what I mean is: my symptoms are currently in a consistent enough state to not register as especially noticeable.

I think an inability to understand that is part of the massive divide between medicine and patients. If a doctor doesn’t understand that this is what I mean when I say I am feeling ok, then how can I explain anything else? When I’m dancing and singing, and laughing, and loving, and teasing, I am doing all that while also being in pain.

The realities of someone who lives with a chronic illness, where pain can just as easily be replaced with nausea or some other symptom, is impossible to conceptualize for someone who hasn’t experienced it themselves. It’s antithetical to the way humans comprehend our reality. We can’t grasp of infinity so trying to comprehend constant unending pain, it’s impossible.

When people try they immediately get overwhelmed with the futility of it all and feel despair. So the assumption is that our lives must therefore always be despair and if they’re not, then we’re lying, but if they are, why don’t we just end it all?

When I say that I have to embrace the reality that I might never get better and see a cure, I’m not being negative. Accepting that reality lets me survive because otherwise, it would be overwhelming despair. It’s not a personal failing, it’s not that I haven’t tried hard enough to get better. This is just my reality.

I understand that for you, that sounds like giving up, but accepting that limitation has been the biggest step in being able to move past. Accepting that this is my reality makes it possible for me to make the decision to self-care. It makes it possible for me to accept that my illness, my existence, is not a personal failing. It is just the way things are.

Sometimes hope kills.

I don’t have the time or energy to spend hoping that I will get better someday. Energy spent hoping of a someday is energy that could be used to improve my circumstances as they are rather than how I want them to be.

It means accepting that “toughing it out” is a waste of energy that could be better spent medicated and doing something I enjoy.

Pain is my Reality

Dear Doctor: A Response From A Patient

Dear Doctor:

Thank you for your letter. It is rare to hear a doctor acknowledge that our knowledge is valid and that we are not imagining how doctors treat us. Thank you for validating that experience. I appreciate your candor. But I still have a problem with your letter, and it’s this: it is still all about doctors and their ego.

I know my disease scares you, it scares me too. Actually it terrifies me.   Except at the end of the day, you get to stop thinking about it, usually shortly after I leave the office, whereas I am stuck living with the consequences of your fear.  Your fear, which has nothing to do with me. It’s not about being afraid of what I am going to have to deal with if you fail, it’s not about making me feel better. Your fear is about the fact that my disease makes you not feel infallible. It’s about your fear that I might not be as in awe of you as I would be if you could fix my problem quickly and easily. You are afraid that you will lose some of your power.

Yes, some of you might genuinely feel bad that you can’t help us, but for many of us, on this end of things, the truth feels closer to the idea that you don’t actually care about us at all.

One way or another, our disease scares you, but we are not our disease. We live with it, we fight it same as you. We are not supposed to be your opponent, we are supposed to be partners in this fight. You are supposed to be our support, and yet over and over again you let us down. I have multiple friends who have undiagnosed pain conditions. Some have received at least the comfort of doctors’ suspicions as to what might be wrong with them, while others have doctors categorically deny that anything is wrong. Some go years without any idea of what is wrong because doctors have neglected to tell them anything.  I have heard countless stories of patients who have been actively barred from getting answers all because of some doctor’s interference.

I myself have had doctors tell me that they were sending me home because they didn’t know what tests to run, on multiple occasions. I have had doctors disregard my pain as just something I should be used to by now. I have been denied treatment, all because doctors were afraid of my illness and couldn’t differentiate between it and me. Just because you cannot cure my illness, doesn’t mean you can’t help me. It means that the help you can give me is to try and make it easier for me to deal with this illness. It can mean taking away the excessive pain for at least a short time. It can mean shutting down symptoms by temporarily increasing treatment with steroids.

You say you fear my knowledge, when in fact my knowledge is your greatest asset. I know you can’t be an expert on everything. I can help educate you on my needs, if only you would listen. But you don’t fear my knowledge, you fear that my knowledge makes us equals. You fear that with my knowledge, it means I will know when you are wrong. Here is a secret: we can forgive you for not knowing or for making a mistake, but we cannot forgive you for choosing arrogance over help or for trying to pretend that you didn’t make a mistake. I will trust you and respect you more if you admit ignorance than if you pretend answers. Learn from my experience. Work with me! What would take you years to learn, months to research, I can tell you in a few minutes. But you have to trust me. You have to work with me, rather than putting yourself above me.

When I tell you my pain is different, that means something. After years of being in constant pain, I’m no shrinking violet that is too delicate to handle anything but the lightest of pressure. When I come in because of pain, when I come in because I don’t recognize the pain, that means something has changed. Yes, it might turn out to be just a new presentation of symptoms, but it can also mean something else. Don’t assume that just because I have this condition I am immune to everything else.

I had swine flu for a month before I was diagnosed, because a doctor refused to believe that I could tell when pain and nausea were different. How many people did I infect in that time, going to class? I have had pancreatitis multiple times, only to have had it dismissed as “just Crohn’s pain” until the tests came in with high lipase. I have had pain dismissed as “Just Crohn’s pain” as though Crohn’s pain on its own was not serious.

Doctors are so concerned with their own importance that they often seem to forget that their patients are human. Then they ask us to excuse them by claiming to be “only” human, when they fail to accord us the same decency. When they are reminded of their mortality rather than their godhood they elevate themselves by treating us as less than human so that they still maintain their upper hand.  And then when they are called out on it, they beg for forgiveness and blame the society that treats them as gods. Rather than taking responsibility for participating in this charade and allowing that to affect our quality of life, you ask us to participate by offering advice on deferring to your egos. Your very apology, your very secret, and your advice all spit in the face of our experiences by putting the burden on weak and exhausted bodies and minds rather than give up some measure of your privilege.

In short, I don’t have time to worry about whether or not I make you feel a little less like a god around me. I’m too busy trying to get through my day with my own body and mind kicking my ass the whole way.

Sincerely,

Patient Ania

Dear Doctor: A Response From A Patient