Processing disability

I was so relieved to get approved for disability without having to go to trial. But it was the day after my husband got home from the hospital stay in which he was diagnosed with cancer, and that whole time period was such a whirlwind that I don’t think I really processed what it meant that I got disability.

I fear that having disability makes people look at me skeptically, especially since I never really had a traditional career. There are quite a few people in my hometown who are getting disability and it seems like the whole thing is pretty sketchy. Some of them admit that they just don’t want to work. And though I’m trying not to care as much what others think of me, I think the problem is that to a large degree I’ve internalized that view.

When I told my sister I was pursuing disability when I saw her last fall, she asked why, since I always worked at home and thought that was easier. (News flash: it’s actually harder in many ways. Plus the MS has affected my thinking, which makes my work much harder to do.) I was admittedly hearing that through a lens of judgment and I was defensive. I’ve always felt like she perceived her much-better financial situation was something she felt she earned and she made numerous comments over the years that were bootstrap-mentality. Like “if I could be this well off, so could you.”

I don’t know if she really thinks that, but I’ve always felt more criticized than given kindness. She used to complain that I didn’t get pictures made of the kids more often to give to her, saying “it’s only about $50 per kid”…which made me feel like a loser for not having $150 to spend on photos.

But I digress. For me, disability is not something I want, even though I reluctantly admit I need it. I’m still debating whether or not I should ask my neurologist to sign the papers so I can get a handicapped placard for my card. The fact that I get disability means I could get one, but I’m embarrassed.

In truth, I’m ashamed of being disabled, even though it’s not anything I caused. I still beat myself up for not being able to control it with diet. I rarely take my cane when I go out even though I often need it. That’s the one aspect in which I am meanest to myself, even though I’ve worked hard to be nicer to myself in other ways.

As I mentioned yesterday, I’ve always been the kind of person who felt compelled to make something of my life. I wanted to be a sociology professor or a therapist. I was just waiting until the kids grew up to have an opportunity to pursue it and the clock beat me.

Is it okay to mourn the things I didn’t get to be? I wanted to travel once I had the money. I wanted to take the kids to explore the world and could never afford it. When that failed, I thought I’d do it myself with my husband. It could still happen, but it’s a lot harder now.

How do you make peace with the fact that you’ve had to give up your dreams? How do you come up with new dreams to give your life purpose and meaning, a reason to wake up every day? I have my husband and kids but the kids will leave me, sooner rather than later. I fear my husband may leave me too due to the cancer.

I am sure that I’ll find something to replace what my dreams were. I’m sure I’ll find a purpose even if I end up alone. But I think that I need to let myself feel sad that my illness (and now my husband’s as well) have changed my plans. I just have to figure out what the new plans are to replace them.

2 Comments

  1. I think writing down what your cherished values are (I’ve done some values clarification exercises in therapy) can help shed light on possible meaningful activities.

    I also think there’s a huge stigma around disability in capitalistic countries due to ableism.

    Like

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