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Let’s talk about what your friend (it’s me, I’m the friend!) with an autoimmune disease wants you to know…

Autoimmune diseases cannot be cured with any one diet or methodology. If it could, all of us with incurable chronic illnesses would jump on board. The wellness industry is largely unregulated, often lacks evidence-based principles, and preys on the idea that certain disabilities and illnesses can be avoided. “Gut health” as an umbrella term that cannot be adequately applied to autoimmune diseases like Crohn’s and Colitis. Please do not send articles like that to me or folks with IBD. Even when it is well-meaning, it is exhausting to experience because it lacks basic understanding of the issues that are at the center of autoimmune diseases at large, which are characterized by their lifelong nature and a lack of cure. Even if you have a friend with a form of IBD that has seen vast improvements with, say, a raw vegan diet (or whatever their diet may be) and you want to share that triumph, I urge you to resist. What works for one person with an autoimmune disease will not necessarily (and often not) work for another person with the same disease. Autoimmune diseases can be “under control” at times, but they cannot be cured or officially in remission. Your friend with a specific diet might find that it stops working at any given time due to a flare-up, and folks who take certain medications can become immune to their benefits suddenly. I have been on intravenous immunosuppressant drugs for over 15 years. I was on one for 5 years that vastly improved my quality of life and then one day stopped working entirely due to a build up of antibodies. It took many years to get my Crohn’s under control again with a different drug, and any day could be the day that the one I’m on stops working too.

I don’t mean this to be negative, but only encourage you to seek empathy for chronic illness patients rather than thinking you’re helping by sending an article based on the newest wellness industry buzzwords. I know that at your core you want to be helpful to your friend or family member that suffers daily, but the most helpful thing you can do is listen to their experience. And when you listen to their experience, please understand that it is only their experience and cannot be applied to others that share the same illness.

We all want to live in a world of quick cures and absolutes. We all want to believe that we won’t one day become sick and disabled. But it is deeply harmful to perpetuate this type of idea, especially for those of us already living with invisible and incurable health problems. Conflating the idea of health (often read as: clean eating and/or lower weight) with better morality is rooted in ableism and anti-fatness, and anti-fatness is heavily rooted in anti-Blackness. Before I get carried away, these things are heavily nuanced conversations. We can unpack these things all day long, and there are many ways to seek out education that provide a deeper dive into those subjects. The point of this is, I can’t be the one to speak for everyone’s experience because those experiences are not mine. You’ll never catch me giving unsolicited heath advice of any kind or pushing the idea of cures / improvements. I won’t even want to share advice about what works for me specifically because there’s no way to know if it could be replicated in another body. All your friend with an autoimmune disease wants you to understand is this. And I’m also pretty sure anyone who has ever been given unsolicited medical advice for ANY reason begs you to do the same.

#CrohnsDisease #UlcerativeColitis #IBD #AutoimmuneDisease #chronicallyill #ChronicIllness #biologic #Infusion

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Anyone experience pain/increase in synptoms a few days before new shot/infusion is injected/infused? #biologic #RheumatoidArthritis #ankylosingspondyl

I feel increase in disease activity, jointpain, morningstiffness and general symptoms two days before new dose is administred. Anyone else experiencing this? My doctors are just shrugging their shoulders and tells me that the meds should work until a new dose is given.