Life Inside Autoimmune Disease & Going Full Steemit Ahead

If you have an autoimmune disease, you want to feel better and you want to achieve remission. Looking back over the last seven years, I’m confident I owe my continuing good health to food and other lifestyle choices. Do you have an autoimmune disease? If so, your knowledge and experience is valuable. You should share it with me!

_{Photo by Lucas Gallone on Unsplash}

Autoimmune disease is an upside-down state of being, where your immune system - there to protect your body - attacks and destroys healthy cells in your body. People with autoimmune disease are connected; Each of us walks through life with some physical manifestation of an inner god that has seemingly turned against us.

Whatever form your autoimmune disease takes, there is often pain. For me, this means red and swollen knuckles and knees. And more recently, I’ve developed red, scaly patches on my elbows, because the physical manifestations can multiply and change form.

Drugs that suppress the immune system are the fulcrum in conventional medicine for restraining this inner god that behaves in bizarre and violent ways, but there’s no cure for autoimmune disease. We can’t vanquish a god we need, and sometimes the God of Pain becomes the God of Death.

In the absence of cures for autoimmune disease, many of us are pulled toward functional medicine, an approach that aims to address the underlying causes of disease. The best of this is still evidence-based medicine, but often a leap of faith is required. Common to all autoimmune disease is the idea of a ‘leaky’ gut, which the NHS (UK national health service) refers to as a “proposed condition”, warning we:

... should be wary of treatments offered by people who claim to "cure" "leaky gut syndrome", as there is little scientific evidence to suggest they are beneficial for many of the conditions they are claimed to help.

My marauding inner god started terrorising my joints in November 2011. Over the years, my clinical symptoms and other patterns have changed. Currently, flares are markedly less frequent and less painful, and recent blood tests showed markers of inflammation all within normal limits, but also one specific marker for rheumatoid arthritis that is now a “high positive” where before comparable tests have always been a very weak positive. Despite this diagnostic and prognostic marker flashing 'amber', today - like most days now - I walk around like regular people, currently with no pain at all and only a little residual stiffness and loss of flexibility from joint changes in my left wrist. I am, so far, one of the lucky ones.

It’s my belief that, despite failing to always meet the accepted scientific standards, some functional approaches, and especially nutrition, are key to maintaining good health. Some but not all… While there is bountiful evidence that dietary changes can help people with autoimmune arthritis, there is nothing to support taking homeopathic remedies for any condition at all. Perhaps it is the clumping together of “alternative” approaches that makes it difficult for rheumatologists to talk (to patients at least) about the scientific evidence for dietary treatments.

I value the NHS and the wisdom of the rheumatologist whose care I’m currently under. I trust him when he says not to worry too much about the high positive anti-MCV test, since my clinical symptoms are well-controlled. But I also think there’s a missed opportunity, that rheumatologists could and should be curious about the lifestyle choices of their multitude of patients, because pattern recognition can lead to actionable knowledge just as surely as laboratory research and clinical trials can. This is why I think patient-to-patient learning is essential learning for the individual with autoimmune disease; We have to find and share this information ourselves.

Autoimmune disease is lonely. Pain is lonely. I feel stuck in my story, and I want to share and break free of it. I want to influence my narrative. I want you to influence your narrative too. I’ve consumed a lot of information alone in this room or that room, and applied it in my own quiet life, I think with positive results. But I’m still a person with autoimmune disease. I’m still a person with a puzzle to solve, a wrathful god to hold back. So I’ve come here, to Steemit, to surround myself with more people, because people are a great resource and it's time I levelled up my learning.