My journey with rare disease
It took many years to get a reasonable diagnosis. It happens to women all over the world. They are told they just need a husband or baby or to get attention elsewhere. It is not true that women somatize more than men but we are still treated as hysterical. I used to let that shame stick to me like mud and I would pepper it with some negative self-talk. I don’t want that to happen to anyone else if I can help it. “Your symptoms are caused by [/insert any psychiatric condition/]“ Just NO. I started doubting my own perceptions, I suppose that was their goal. I told myself that that’s what a reasonable person would do.
What we have in common
I’m emotionally recovered somewhat and I can share a little now with you. There are many ways women are still marginalized today. But I believe together, men and women, we can listen to each other to understand. I was misdiagnosed with MS for a very short time, then general dysautonomia and then finally a multi-system degeneration of an autonomic nervous system appeared on my chart. I’ve been in a chair for less than 5 years. I have some unique challenges but I like to talk about the things we all have in common.
Coming back to ourselves
A lot of people with disabilities struggle with shame especially at the beginning of their journey. Shame has the power to destroy lives. It’s a tactic of manipulation since the beginning of time. I’m still healing from shame. It comes in so many disguises, it can come as "helpful" advice, accusations, disbelieve, gaslighting, ableist and misogynistic comments, moralizing, “speaking the truth in love” etc. These messages are meant to put us back in our place.
Being disabled, chronically ill mom brings a lot of challenges, from financial, logistical, practical (for example housekeeping, extreme fatigue that prohibits me from having energy to do all the things that I would like to do with my kids), emotional - as a result of past trauma and the reality of living with chronic discomfort, pain and even unwanted daily attention from strangers. I’m still sensitive to how uneasy people are around me every day. I believe the absolute cornerstone of equality is to be able to in control of our own narrative. A few years after I moved across the world, leaving behind everything I ever knew and every relative I have, around the same time I started acquiring my disability, our family experienced financial hardship. I became the black sheep of the flock by advocating for LGBTQ+ folks and I lost the only community I had, which in combination with my fundamentalist upbringing resulted in full-blown religious trauma.
When I started getting profoundly unwell and sought medical help, what I got, in the beginning, was gaslighting and accusations of malingering. What I learned from all of that is, that if you have privilege, you have the power to tell your side of the story. And my dream is for all the marginalized people to unite for the same goal of everyone being able to tell their own story. I created a #allmarginalizedtogether so we can hear each other's stories but I realize it’s a long shot or perhaps just a crazy dream.
What this illness has brought me
Lastly, I believe it is important to highlight all the positive things that this illness has brought me. Not the least of which is now I get to be part of the most capable, innovative out-of-the-box- thinking community of people that support each other in navigating the world that is not built for us. People that are willing to share resources and stories of trauma and recovery, stories of defeat and victory and even advice on how to go to the bathroom. My dream is for all groups that experience injustice, religious trauma, medical trauma, family trauma, disabled abuse, racially driven abused, refugee and emigrant abuse to unite, fight for each other, listen to each other and facilitate healing.