6 responses to “Stop and think: invisible access for invisible disabilities”

  1. Evangeline Heiliger

    I cried when I read this post. Your description of CFS, of invisible disabilities, of the judgments, are all so familiar. My mom developed CFS more than 20 years ago, when I was 12 and my younger brother was 9. (My older siblings were in high school or beyond.) For years, all she (and my siblings & I) could say was that she was tired, that she didn’t feel well. There wasn’t language to describe what she was going through, nor was there much sympathy for her limits–just a lot of judgment by others in my small community for failing to measure up as a (single) parent. Their judgments communicated to me that I was neglected, unworthy and subject to pity, complicating both my relationships with those adults, who my brother & I often relied on for care, and my relationship with my mother, who I loved but resented for “making me” do so much of the adult work of running a household: cleaning, paying bills, cooking, grocery shopping, laundry, keeping tabs on my younger brother’s whereabouts, taking extra jobs to help pay bills, etc. I interpreted her need to rest as “checking out” and in my adolescent self-absorption, assumed she didn’t want her kids anymore. The ableism all around us reinforced my beliefs. I got so used to taking care of myself that during her rare moments of higher energy and engagement, I would get angry, feeling like she was “picking and choosing” her parenting moments. I wanted stability and she couldn’t give it. Her guilt and my resentment made for explosive interactions. Talking about the effects her CFS had on all of us wasn’t something any of us could do at that time.

    Mom manages her CFS fairly well now, but it took years for her to learn how to juggle her spoons without crashing every weekend, years for me to accept her limitations as simply part of life with my mom. Ten years ago, she left my college graduation ceremony early to go and rest. My dad and stepmom made snide comments. As a teenager, I would have internalized their words. Instead, I told them she had a chronic illness, it was important for her to rest, and it didn’t hurt me any, so they didn’t need to worry about it. When mom later apologized for leaving the ceremony, I told her it was no problem: what mattered to me was that she showed up that weekend, and got to see where I had lived for four years. She had already driven 12 hours with my younger brother to get there; of course she was tired! Heck, how come she wasn’t on the floor yet? She laughed and said “Oh, I’m getting there, don’t worry!” and dramatically collapsed on the couch. I know now to have quiet places with comfy chairs and a couch or bed for her to rest and retreat, especially if it’s a large group of people. If she wants to sit and chat with me and my siblings while we cook, no problem. If she wants to cook with us, we can all sit at the table to do the prepwork. And if she wants to make a meal for her children or drive me somewhere, I need to respect that *she knows best* how to take care of herself, and trust her decisions about how to spend her spoons.

    For me, being able to understand chronic illnesses’ overlaps with disability was what made everything click: mom couldn’t put life on hold to “get well”–this was her life. And she needed to live it as fully and happily as she could within the limits of her physical and emotional energy. I didn’t know anyone using “disabled” to describe CFS until recently, but it was what made sense to me: she didn’t need “help”, she needed access to do for herself. She needed to be able to say “No” or “Can you please do X?” without guilt, shame or judgment. And she needed me to support her by talking to her and to others about her CFS as something normal. Because for us, it IS the norm.

    Thanks for writing this. I’m definitely going to print out your post and send it to my mom.


  2. lauredhel

    Hi Evangeline – thankyou for your comment.

    What you’ve described as your thoughts about your mum, growing up, hits on one of my very deepest and scariest fears as a parent. I’m really trying to bring my kid up with a bit of knowledge of disability issues, but can a first grader have the cognitive and emotional maturity to work outside of the “it’s all about me, something bad is happening, therefore it must be my fault” mindset? I don’t know. So difficult.
    .-= lauredhel┬┤s last blog ..Exclusively breastfed baby denied insurance unless he goes on a diet =-.

  3. Ouyang Dan

    Thanks for this post, L. It’s awesome. Original meaning. ­čśÇ

    Sometimes I use the things you write about as a model for how to make my life a little easier, by watching out for limited access and doing what I need to get it.

  4. Toni

    Thank you for writing this. Aughhh! The internal scream I have when I hear “you are sounding better” or even worse “you are sounding like your old self”.

    I am always myself, I want to scream. Thanks for putting into words what has troubled me for ages.

  5. Sarah TX

    Thank you for this post.

    My father was finally diagnosed with CFS sometime around 1995? ’96? I don’t remember exactly because I was only 10 years old at the time, feeling burdened with tons of live changes associated with this illness (his wrongful termination, moving back to his hometown where we could afford to live, my SAHM working while Dad stayed home and slept, etc. etc. etc.) As I grow older and hear more and more stories from people with CFS and their families, I am so struck by the commonalities.

    It is actually sort of funny – my father lost vision in one eye due to an accident a few years ago, and he now wears those stereotypical wrap-around sunglasses to protect his remaining eye (which has become sensitive to light). Now he has a visible “disability” (although really his depth perception is the only thing affected – he still drives and such), some people are much more accommodating than before!

  6. Jonquil

    Thank you.

    Last night I went to a CBT therapy group. The organizer told us all to do an extra 10 minutes of exercise a day. I raised my hand and explained that because of my invisible health condition, I couldn’t. TWO SEPARATE PEOPLE in the group of ten took it on themselves to say, in succession, “Oh, come on, surely you could exercise for ten minutes! It would be good for you!” I told them a little — too much for my comfort — about my physical condition. I left steaming. Note that the therapist didn’t intervene for me, and it didn’t occur to me until later that she should have.

    Luckily, today I found an individual CBT therapist, so I won’t need to go to that group again.