I have a new thing, and I didn’t want to talk about it. In part, because of stigma. Mostly, because of stigma.
Stigma has played a huge role in how I have responded to my own chronic autoimmune diseases for almost 20 years, in fact. I’m incredibly disappointed that not much has changed in all this time.
When I was diagnosed with type 1 diabetes almost 20 years ago, I was very aware of the stigma against people with any type of diabetes. I grew up in Alabama. People with diabetes were perceived by society to be lazy, out of control of their own behaviors, and any complications or outcomes were their own fault.
It wasn’t – and isn’t – their fault. The tools and technologies (not much technology then) did not give people a chance at good or great outcomes. The tools and technologies failed people. Yet, people and their behaviors were and often still are blamed, shamed, and treated poorly in society and in medicine and the healthcare system.
The first day I was diagnosed and sent from my primary care doctor’s office to the pediatric endocrinologist, I was scared. Diabetes in society was presented to me as amputations and kidney disease and other not so great things. I didn’t know anyone with type 1 diabetes. And when the pediatric endo came into the room for the first time and said, “Don’t worry. We can get you an insulin pump, it’ll be great!” my reaction was: absolutely not. An insulin pump will be a visible label that I have diabetes. Instead of a chance of being blamed, shamed, and treated badly – I will almost certainly be labeled, blamed, shamed, and treated badly. No, thanks.
And so I didn’t get on a pump (at first). It wasn’t until I realized that a pump would give me freedom, to sleep in and not have to wake up and eat a pre-allotted amount and take insulin, that I decided the personal freedom was worth the labeling, dirty looks, blame, shame, and negative treatment.
And I regret it. I regret how stigma shaped my reaction to possible tools and technology that would aid me. I’ve strived ever since to not let that factor into my choices.
But last week, I realized stigma was still playing a role. I have a new thing, and I rationalized my choice not to blog about it because it’s a well-known thing, and as a newbie, surely I didn’t have anything to add to the public discourse about this thing. Information is available about this new thing, and I wouldn’t be adding anything new. What did I have to say that hasn’t been said before about this common topic?
But after a few days, I realized my decision to not blog about my experience was also driven by stigma and fear of how I’ll be treated when I share publicly that I have YetAnotherThing on my list of things I’m managing. It’s an autoimmune thing, again. It’s not “my fault”. It’s not at all in my control.
Because my immune system is too strong for my body to handle, I have not one, not two, but now three autoimmune things. (And 4 things total, but exocrine pancreatic insufficiency is possibly not an autoimmune thing so I leave it off the list even though it’s on my overall list of things I’m managing.)
Like people with physical or visible disabilities, having a chronic disease and talking about it publicly gives people the feeling that they can publicly shame and blame me “for my own good”. Or hypothesize on what I’ve “done wrong” to get to this point. Or to “suggest” things I can do to better manage. Often, these things are scientifically wrong. (Note: this is why ‘cinnamon’ is a joke for people with type 1 diabetes. There is no cure or treatment for type 1 diabetes other than taking insulin for the rest of our lives. Cinnamon does not cure diabetes, yet it and other things are presented to people with diabetes as “alternative” methods that would in fact, kill me if I relied upon those and stopped taking insulin.)
I dislike this. I dislike the fact that being open about what I’m dealing with, in order to possibly help other people also dealing with the same thing or identifying gaps in the healthcare system, invites judgment and all of this commentary. Let me be clear: I do not invite that. Ever. Not now, not in the future. Not about diabetes, not about celiac, not about exocrine pancreatic insufficiency, and not about my new thing. I’ve noticed more and more other advocates writing in their tweet threads or their blog posts “This is not soliciting advice or suggestions”, because so often we ARE bombarded with “advice” or “suggestions” that are unsolicited, and like I mentioned above, possibly dangerous if not outright deadly.
I don’t have answers. I can’t fix the stigma in society. The best I can do is perhaps write about it and talk about it and help shine a light on the fact that it 100% does impact people. It prevents other people from seeking healthcare when they need it. It prevents people from sharing and processing their feelings, or reaching out for help when they need it. It causes harm. And we all need to do better as a society.
So I am sighing a lot, and writing this blog post first so I can process my feelings that are blocking me from writing the next blog post. The one with scientific information and citations as well as an articulation of my experience and situation, in hopes that one day someone on page 18 of a search engine will find it when they need it. It’s not for everyone.
But as always, I think that if it eventually helps one person, then it’ll be worth it. It’ll be worth the stigmatizing response that some people will have now and in the future when they realize I am someone living with multiple autoimmune diseases. I hope. It’s always my hope. I’ve had this tagline on my email ever since I first had email, and I still believe it’s true today which is why I wrote this blog post and am now turning to writing the next one:
“Doing something for someone else is more important than anything you would do for yourself.”