Guest Post: Embracing Disability, Struggling for Emancipation, part one: Rocky Beginnings

Eliot Renard is a genderqueer, feminist, socialist Chicagoan who enjoys making math and science accessible and fun for students through various online tutoring programs.  Ze also has a health blog, personal blog and tumblr, because compartmentalizing is fun.

I began experiencing the symptoms of what I now know to be depression, fibromyalgia and chronic fatigue syndrome when I first hit puberty.  When I complained, the doctor would usually laugh and attribute my complaints to growing pains.  I was told many times by family members and medical professionals to grow up and to stop complaining.  So, I did.  For a decade.

Fast forward to now, and I am once again vocal about my experiences.  This willingness to speak up – to come out as a chronic pain, fatigue, and depression sufferer – has been incredibly beneficial.  I am now on treatments that greatly reduce my muscle pain and depression symptoms, although I have yet to find a solution for many other symptoms.   I have a supportive husband who understands when it’s me speaking and when it’s the pain speaking.  He has adapted admirably to “physical contact rules” that change daily.  He encouraged me to seek out a therapist, which I was reluctant to do after an extremely negative experience with a therapist in my childhood.  He helps me with whatever tasks I cannot accomplish on a given day.  In short, he is a wonderful spouse helping me through a very rough adjustment period.  The rest of my family, however, is problematic.

When my health began to decline rapidly this past summer, I assumed that my mother and grandmother, both diagnosed with rheumatoid arthritis for at least a decade, would understand what I was going through, and instinctively know how to support me.  This assumption was untrue and unfair; being in pain and watching a loved one in pain are two very different experiences.  So, after many conversations in which I asked them repeatedly not to say some hurtful, untrue, and pointless things*, I sent out an email with a list of the offensive remarks, why they were offensive, and a request that the remarks stop immediately.

Unfortunately, this attempt was unsuccessful.  Every phone call was about my illness, and how I wasn’t doing enough to get better – I should be exercising more, undergoing this or that treatment, stopping this or that medication, finding something I “really want to do”, unlike the graduate school I loved and had to leave because I couldn’t get out of bed, much less get to campus and perform a 16-hour work day, being happier, etc.  Things got bad enough that I attempted suicide in September.  It felt like I was not only losing my physical and mental functions, but my family as well.  Nothing I tried was working, and it seemed that there was no way out.

After the suicide attempt, I turned off my phone for a week.  The first person I called when I felt well enough to use the phone was my little brother – he needed to know that none of this was his fault.  My sister’s 6-year-old son happened to be present, so I got to talk to him, as well.  My nephew noted that it had been a long time since we had talked.  I replied that I was sick and needed to turn my phone off for a while.  My nephew’s response was absolutely perfect: “Well, I’m sorry you were sick, but I’m glad you feel better.  At school, I got a dinosaur, and…”

Why can’t the adults in my life figure that out?  Why is treating someone like a person so difficult, not only for my family, but for people on the street or the bus?  Most of my frustration is not actually born from the constant pain, fatigue, fog, etc. – it is from the rest of the world failing to accept me as I am.  And, given the amount of frustration my illness itself causes me, that’s saying something.

*[Bingo, anyone?]

4 Comments

  1. *hugs* I am so sorry you’ve had so much trouble with your family and that you felt so bad you attempted suicide.

    I wonder how old children are before they learn the “if you’re sick it’s your fault” meme.

  2. @sanabituranima: Thanks. 🙂

    I definitely had that meme down when I was twelve. Sadly, I think my nephew is learning this quite a bit earlier. I worry what all of the ableism around him so young would do to him if he ever got sick.

    There are so many things I want to fix, but I have no idea how. (Other than using similar techniques on my adult family members as they are using on me…but a) that is not actually “fixing things”, and b) I’m not willing to perpetuate this cycle.)

  3. I can’t believe you dealt with that much pain for over a decade. It sounds like you have a wonderful husband that can hopefully help you through this. Thanks for sharing.

  4. I just wanted to say a)I am sorry your family deals with your health so badly and b) thank you for writing this. My family does not take it as far as yours, but as I rejoin them again for the holidays it is really stressing me out. Reading this article helped. Thank you.