How are you?

Three little words that seem so innocuous and yet can be the straw that breaks the camels back on a bad day. When it comes to my mental health, where I’m at usually intersects with how well I’m coping with both my disability and my chronic illness.

Little did I know, my journey with disability and chronic illness began at birth. I inherited a genetic connective tissue disorder called Ehlers-Danlos Syndrome (EDS) that effects essentially every part of my body, inside and out. However, like many with EDS, I wasn’t diagnosed until adulthood. EDS is considered rare and therefore it isn’t what comes to doctor’s minds when presented with the seeming unconnected symptomology of fatigue, muscle and joint pain, heat intolerance, fainting, spontaneous dislocation and ligament tears, and gastrointestinal issues among others, in combination with often fairly normal lab results. As a result we are often misdiagnosed, dismissed, or passed on to other doctors so that we’re someone else’s problem.

My personal favorite is, “you’re probably just dehydrated”, after I described an episode to a cardiologist in which I became dizzy, lost my hearing and sight, projectile vomited, and then fainted on the sidewalk – all after having consumed almost three liters of water that day and was actually very well hydrated according to the ER’s blood work, and all I’d done to provoke the episode was stand up! Other equally condescending and dismissive responses include “you’re just anxious” (I was already on antidepressants that were working and I didn’t feel anxious at all) and “it’ll go away if you lose weight” (I actually lost 50 pounds just in case they were right and my symptoms actually got a lot worse).

So, when you’re constantly dismissed by people in the medical community it becomes a habit to dismiss yourself. Responses like “I’m fine!” and “I’m doing well!” become second nature and burying your actual feelings becomes a survival mechanism. People with disabilities are made to feel like we can’t contribute in the same ways as our able bodied counterparts, that our disability or chronic illness somehow diminishes our value, and that we need to push ourselves past our own limits in order to be perceived as capable. Together, it all takes a toll on our mental health and ultimately our quality of life.

For myself, tackling my own internalized ableism has been an uphill battle. I’ve started to use alternatives to “I’m fine” such as “I’m doing OK” or “Can’t complain” but would like to get to a point where I can respond with the more honest “I’ve felt better” or “Not great but could be worse”. In March I bought my first wheelchair and that was a big step. Big because in buying it I admitted to myself and the world at large that I physically need the help, despite the fact that I may not “look” disabled, despite how others may perceive me as a result. I knew this day was coming and I’ve been gearing up for it, telling myself I deserve the help I obviously need and that there is no such thing as “not disabled enough” for a mobility aid, but it’s still hard.

Oddly enough, I find that I’m actually mad at myself that I find it hard, because if I can be understanding and compassionate for others why can’t I be the same for myself?! Am I or my experience of being disabled any less legitimate than anyone else’s?! No! To draw a comparison with academia, it’s almost like I have Imposter Syndrome but about being disabled if that makes any sense. Getting a diagnosis helped me make sense of all my health issues, but finding out it’s genetic somehow made me feel more “legitimate” as if to say, “Here! Look! I can prove I’m unwell and am not just being dramatic or attention seeking” which in itself is an unfair characterization of anyone experiencing daily pain no matter the cause. This too is a result of constantly and consistently being dismissed by those who are supposed to help figure out what’s wrong, and all of these ideas ring as true for mental health as they do for physical disability. People’s mental health should never be dismissed and they shouldn’t ever be made to wait until they are in crisis to get access to care. 

Thankfully, I was lucky in the support system I had during grad school, when my symptoms became much worse and I was at the doctors or in an ER often. My PI was supportive and concerned and let me take the time I needed to ensure not only my physical health but my mental health too. The sad part is that I’m painfully aware that my experience during my PhD was RARE! It is rare for a PI to excuse so much time missed in the lab, it is rare for a mentor to ask how you’re doing mentally and financially as you deal with all the added stress of medical tests and medical bills, it is rare for students to be shown that kind of kindness and compassion. To know that if I had been in any number of other labs during my time of crisis that I would have had to leave academia, without completing my degree and with no place to go, is devastating.

So, I want to share my story in the hopes that it will help others feel seen and heard. In the hopes that Universities will see the importance of tackling the stigma around mental health. In the hopes that people see that mental health intersects with so many other facets of people’s lives and often more than one thing needs to be addressed to fix a systemic problem. I know that I will continue to work on myself as I work to change the system for the better  – and I hope you will join the fight too!

by Roo Steinberg

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