The Autoimmune Diaries: Let’s Talk About Pain

If the bone crushing exhaustion was not hard enough, the other side of the absolute nightmare of autoimmune disease is the pain. Autoimmune disease affects women more than men, and of course this means the patriarchy comes into play. Women are never taken seriously medically, not even by other women. We are dismissed, told it is our hormones, our stress levels, all in our ‘hysterical’ minds. The word even coming from the latin for ‘womb’ – hysteria is presumed rather than disease and pain.

When I finally managed to see a doctor after the notorious ‘Detroit coughs up blood and it won’t stop’ disaster, things had ramped up. My hands were riddled with arthritis, I was in considerable pain, and the doctor could not deny that something was up, even though he momentarily wondered if it could be something other than blood. He asked: “what did you eat today?”, with a look of disbelief on his face. I coughed again and a blood clot appeared in the tissue. He stopped doubting me, or so I thought. Though my medical notes read “She seems like a reasonably reliable historian.” Nice. The medical profession hates its patients. It does not believe us, it does not like us, it presumes we are just hanging around in order to get them struck off for prescribing pain relief that works.

That first trip I explained how much pain I was in, and was told to take a paracetamol or aspirin. I explained I have celiac disease and that was going to make me sicker, and hurt my stomach. He shrugged his shoulders. Not his problem. The specialist was even worse. She dismissed my pain and told me to get a topical gel to rub on my fingers. I again explained that as a celiac rubbing things on my hands that was not safely gluten free was not something I was going to do. Clearly there was something going on other than celiac disease, and I did not need to awake that giant too. I was dismissed with nothing.

The next visit, I received a devastating diagnosis, the xrays showed bone erosion. No one can fake that. The pain has a definite proof to it. My blood test results were ugly. I told her explicitly how much pain I was in. She laughed and said ‘the prednisone and the methotrexate will deal with that”. Right. Because they heal missing bone, right? Wrong. Dismissed, laughed at, shown no mercy and sent on my way with terrible drugs and a terrible diagnosis and no mercy or compassion at all. I told her my quality of life was suffering. She did not care. There will be no pain relief.

A tiny fraction of overdoses are from pain patients, yet it is pain patients who are suffering because of the fentanyl crisis. Leaving people with verified illnesses that cause pain to suffer is inhumane, but somehow it has become moral to suffer and hurt, and immoral to use the pain relief tools humanity has at its disposal, that have few side effects apart from the body needing it after a while. Prednisone, a steroid is highly physically addictive. It cannot just be stopped, as the body will go into adrenal crisis. It takes years to wean people off it, yet it is prescribed and used because it works. Opiates are no different. They work to give people their lives back. Pain, and lack of it is not a moral issue. Governmental guidance which stops doctors feeling comfortable prescribing pain relief has caused immense suffering. It is causing me to suffer.

I do yoga, I do meditation, I walk, I keep my weight down. In fact due to the disease and the amount of pain I am in, and the fact the chemo did a number on my stomach I can’t eat much at all. I have dropped ten pounds in only a few weeks. My arthritic joints, which show the bone has been eroded and thinned, my own body eating its own bone, hurt. I struggle to get up out of chairs, I get tired because of the pain. I hurt every moment of my life. I cope with it. I use legal marijuana and cbd. I am considering kratom which is legal in California. It makes it bearable, but there are better options which would make me more able to enjoy life.

I have heard absolute horror stories of people suffering from autoimmune disease not being given the simple mercy of adequate pain relief. We are all offered nsaids, which destroy the liver, and mocked and laughed at by the medical profession. It is not that they don’t believe we are hurting, it is that pain has become something we are expected to tolerate. We are seen as pathetic for needing relief from the pain. We are not treated in a humane way. I swear the powers that be would rather give people euthanasia for pain, rather than a simple prescription for morphine or oxycodone. We are seen as better off dead than living life as well as we can. Can’t have people feeling good now can we? Can’t have people questioning motives, or wondering if this abhorrent ableist agenda which punishes disease is some form of eugenics. Only the fit and healthy are required. Welcome to the machine, boys and girls. Stay well… or else.

I was never much good at paying any attention to what the system expects me to do, and no one should expect me to start doing so. The first step to taking my life back from the clutches of this disease was to say sayonara to the doctors, the CT scans, the endless tests and the terrible drug regimes. If they can’t be fucked to get me out of pain, I cannot be fucked to play ball with them. Instead I am going to see what I can do to make my life as good as possible. Alternative medicine, yoga – what ever I can do for myself without sitting like a naughty school girl begging teacher for scraps. I am stopping thinking of myself as ill, and encourage everyone else to ‘think me well’. I want to hear fighting talk, not sad resignation.

Pain is not a moral issue. We need to have discussions about how much we hurt, and what we can do about it. Pain should be treated with the wonderful, long standing and effective pain medications we have at our disposal. Opiates work, with surprisingly few toxicities as long as dosed correctly and given regularly. It does not kill the liver like paracetamol does, which, lets face it, might work for a headache, but doesn’t do shit for eroded bone and arthritic joints and spines. The government should not have a say in whether or not pain patients are treated humanely, and getting out of pain should not be seen as immoral. In fact the immoral thing is to say that a disabled person’s life is not worth as much because they need help with pain. It is immoral how doctors have come to view pain, and how they protect their licenses before they help the patients, and how we have allowed medicine to become bullied by politics.

My pain exhausts me. It need not do that. It should be adequately controlled. I feel even sorrier for those suffering from fibromyalgia, as their pain is dismissed to an even greater extent, and wrongly portrayed as being ‘in their heads’, or somehow their own fault because they cannot relax. Autoimmune disease is physical, not psychological. The pain is real, the damage is real, and the eventual consequences like organ failure are very real indeed. Our lives are worth living and worth living well. That is my goal – to live what life I have left, which is hopefully a long one, as well as I can.

When I asked the rheumatologist about my life expectancy she giggled and replied, “Well you won’t make 100.” Bitch. Please. I will never willingly darken the door of a doctor’s office again. We will see how long I can ride this wave, and if any of the more ‘out there’ alternative therapies can make the bone eating locusts of this terrible disease fly, fly away.

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