Patient blaming #chronicillness #survivor #support #autoimmune #disability

Even in the midst of some of the most terrible challenges, I am shocked to see some disturbing patterns emerge from within our own autoimmune brotherhood (and sisterhood) which defies all of my understanding.

Isn’t it bad enough that we have to face the able bodied world, with their misconceptions, misunderstanding and judgements that we also have to start judging each other?

For as long as I have entered the world of the autoimmune I have learnt that we are all affected differently, treated differently, respond differently and manage differently. It is almost incomprehensible how someone can share the same diseases as you but have an entirely different experience as you, but that is also some of the challenges with these diseases and it makes you learn how to listen to your own body and get to know it as best as you can.

At the same time as many reach out to the autoimmune community you may find a lot of similar stories, hardships and frustrations, and you can be encouraged by the knowledge that someone understands you when the rest of the world may not. There is a an old saying amongst the autoimmune community ‘you don’t get it, unless you get it’. And that pretty much sums up the majority of our experiences with these diseases. We understand its hard to let go of the old lives we had, its awful to lose some people that were close to us, its isolating going through a flare / relapse / atttack and it is dehumanizing when you are confronted with a very uncaring and sterile health care system; mostly because many of the health care providers have no idea what these diseases feel like.

So why are we making it harder on ourselves when we turn some of those awful judgements and critical behaviors on each other? I read constantly on the internet how some new diet or exercise regime is “curing” autoimmune diseases, and if you aren’t doing X and Y then you really aren’t committed to getting better! Don’t get me wrong, I am a true believer that a good healthy diet, and some exercise (as much as your body can handle that is) is important for your body as well as your emotional well being, but I will not go down the path of “patient blaming” that so many are going in droves. Its not fair. Its not justified. And its just plain cruel.

If you have found improvement from giving up eating onions and radishes I am truly happy for you. Even if you find drinking grass clippings beneficial and rubbing rabbit droppings on your earlobes helpful, I will be the first to wish my sincere best wishes. But for the rest of us who have tried different things and have found no substantial or sustainable benefits it only makes us feel more isolated, more rejected and more of a failure. I can not see ANY benefit in this form of passive aggressive behavior and I wont let patient blaming become part of the language from inside the autoimmune community and outside! We don’t deserve such treatment after all our bodies and lives have been through!!

Suffice to say that after 8 years of battle there isn’t anything I haven’t done, eaten, drank, rubbed, ingested, injected, chanted, self affirmed, read, eliminated, altered and begged to be healed. It hasn’t worked for me. It hasn’t cured me. It hasn’t transformed me but I will NOT be made to feel that I have doomed myself to oblivion because I didn’t drink yaks milk every other Tuesday. And even more importantly I am not going to blame other sufferers for getting better, for not doing what I have tried, for achieving remission or for trying whatever they wish to try on their own journey with these very difficult illnesses.

If we want the acceptance and support of the able bodied world and the health care professions, we must make sure our own house is in order as well. We must agree to support each other and validate each others own experiences. Anything less would be cruel and unfair.

I would like us all to do our best to help stop this constant cycle of patient blaming  that keeps raising its ugly head in the posts and articles from health care professionals and patients alike. If you see something, say something. Don’t let these actions go unnoticed or unrecorded.  Speak your truth and tell your own reality without fear. If these awful diseases teach us nothing else its how to be our own best advocate. I don’t think there is any other group of patients that come under such repeated attacks as the autoimmune and chronically ill, we are constantly called into question over our actions, our inaction’s, our mental stability, our emotional stability, our motives, our beliefs, our efforts and our truth. This rarely happens with many other diseases, illnesses and health condition, I don’t believe it should be a factor in the way we are treated either.

Gentle hugs,

Trish

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