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24 Years Sick: A Shifting World View




Today, June 18th, marks the 24th anniversary of 'getting sick'. Or maybe now, after all of these years, I would change that language to say: becoming disabled. I've now officially lived more of my life disabled than not.


It took me until this past year to more openly describe myself as and identify as disabled. To begin to explore the intersectionality of being a disabled Jewish woman.


What took so long, you might ask? Or, why now?


For me, there are several factors (and more than one blog post needed). The breaking point for me was landing on a new therapist's couch and saying: "I am completely exhausted in a new and different way and I don't understand why."


That was when I began to really understand that by not identifying as disabled, I wasn't doing myself any favors. I've spent the past 24 years trying to live as a non-disabled person in a disabled body. I constantly overcompensate for what I can't do with what I can do. In particular, I felt that what I couldn't do physically, I could make up for by taking care of others emotionally. By being available to others at all times. By prioritizing the needs of others over mine. I feel guilt over how much rest I need.


After all, I *take* so much from the world, especially my mom, I had better make up for that, right?


When I had any energy, I'd use it to nurture others. I felt guilty writing, working on RRR or nourishing my passions. These were *selfish*. Would I EVER judge a friend for pursuing her passions? For finding joy in something? Um, no.


Writing and RRR are survival for my mental health. As I move forward, I'm prioritizing my mental health as much as I prioritize my physical health. This is the only way I feel that I will live a life filled with passion, purpose and joy with the challenges of my disability.


I've spent a tremendous amount of energy trying to look like and be like my non-disabled friends (including how long I tried not to use a wheelchair). And comparing how much they can do or get done in a day to what I can. Because it's so difficult to be disabled in our society, I unintentionally chose what felt like the path of least resistance when living with invisible disability.


Let's just pause for a moment to acknowledge HOW MUCH INTERNALIZED ABLEISM is going on here. And what kind of society we live in that tells people with disabilities that they are valued less. Yes, I did mean to be shouty there with my caps.


Recently, my dad and I were having a discussion about some 'hot topics' when it comes to marginalized populations. As we talked more, I blurted out, tears in my eyes: "We are just fucking exhausted." I think my dad was a bit stunned--not just because he hates the F-word.


I don't yet fully know what living more openly and accepting of my own disability looks like. My feelings around it range from anger and frustration at how terribly marginalized populations are treated (something I was already acutely aware of) to a sense of freedom and relief in being more authentic and vulnerable.


Thank you to all of you--old and new--who are on this journey with me.


Blessings,


Emily


Photos: All photos taken in the past couple of months--capturing the many states of chronic illness and its ups and downs.


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