Making peace with identity change of disability

November 17, 2020 8:08 PM

Once, a part of your identity was "the person who does X". But now, you are a person who can't do X, or can only do a sort of X with much greater difficulty and effort. How did you come to terms with this?

The question is phrased as "you" because that was simpler, but in addition to personal stories I am also looking for articles, memoirs, podcast interviews, anything about how to come to terms with the loss of ability/ies that used to be part of how you thought of yourself as a person and defined who you were.

posted by Cozybee to Health & Fitness (8 answers total)

Here is a personal account of such an adjustment.

Therapy is great for this. It's a loss that has to be reconciled, the grief needs to be felt, and the new normal needs to be considered.

My disability is intermittent. When it is acting up, I have a bracelet given to me that has a little inspirational swearing message to keep me strong. On my bad days, I let it be ok to cry and to feel a little sorry for myself. As long as I don't let that self-pity sink too deep, it's not really avoidable to feel some of that.

So the general answer is you move through it the same way you move through any other loss. Messy, or avoiding, or angry, or all of the above. You do the best you can. You honor where you're at with your adjustment one day to the next and try to stay honest with yourself.
posted by crunchy potato at 8:37 PM on November 17, 2020 [7 favorites]

I have two disabilities, one that I was born with and one that is progressive. I haven't quite gotten to the "person who can't do X" yet but I'm very limited in that capacity now and I will be there one day. It does get tougher and tougher. My experiences have shown me that in many ways, losing something is far more challenging than never having it - because of that adjustment. It's hard.

But I have lived with disability my entire life so I can say this: It is not something you "get over." It's something you live with everyday. Perhaps some days are easier than others. It obviously depends on what you are dealing with and the resources and people you have in your life. But we humans have a tremendous capability of adaptation and you may not realize just how adaptable we are.

It's ok to grieve. It is loss. It's ok to feel sad and scared and frustrated and angry. But this grief does not mean you should despair because it isn't the end. But coming to terms with the loss doesn't happen overnight and that's ok. And if that loss was tied to your identity, it can be that much more painful. But a piece of you isn't all of you and there are ways to still find joy in what you no longer can do. Like how athletes become coaches when they can no longer play the game. There is still a life afterwards that can bring joy even if it looks differently from how it used to.

Sending you love. Feel free to memail me if you ever wish to talk.
posted by NotTheRedBaron at 11:50 PM on November 17, 2020 [9 favorites]

In my early 60s I had Charcot Ankle Collapse. Now my right ankle is surgically attached to the leg bone and doesn't bend in any direction and causes some pain when walking. This was easier to adjust to because that's not a enormous loss, I get around with a brace and cane, and I'm in my 60s and not going dancing, not trying to pick up sex partners, etc.

I had a breakthrough when following hospitalization I was ten days in a recovery center, a place we used to call a skilled nursing facility. At dinner, I saw people who were so damaged, who couldn't move without someone to push their wheelchairs and some people who couldn't feed themselves. My breakthrough was a cliche but it had a profound emotional effect on me: there are people profoundly worse off than I am.

I live in a condo and when people asked how I was I said, "I'm great! I can drive to the liquor store and back all by myself."
posted by tmdonahue at 5:22 AM on November 18, 2020 [5 favorites]

Before (when my back worked just fine) I was person who did not sit still. I did not realize how much of my identity was wrapped up in my lifestyle until I was forced to change my lifestyle because pain.

I share the feeling that you don't "get over" it. My life will never be what it was before and sometimes that makes me really terribly sad and angry.

I also had a brief scare (misdiagnosis) that has made me acutely aware that "there are people profoundly worse off than I am."

I have been coping with my new normal for over a decade and one wonderful thing I didn't realize until you asked this question is that because of my new limitations I have grown and blossomed emotionally and merged my physical challenges into my lifestyle to a point where I am probably (I hope) a kinder, more compassionate person than I might have been otherwise.

Thank you for asking this question. It rang a bell inside of me and I think it will help me when I feel terribly sad and angry.
posted by RobinofFrocksley at 6:12 AM on November 18, 2020 [7 favorites]

As a cancer patient, I think about this a lot. In fact, I think about whether I should change my MeFi handle because I don't know how long I'll be able to keep fencing. And I kind of regret naming myself after an activity that can disappear from my life. Right now, some of my fencing buddies are able to fence outdoors, but I don't feel that's safe for me because I'm immunocompromised. I'm taking zoom fencing lessons, which is not the same. So even though I'm still doing pretty well, all things considered, I'm glad you asked this question.

I recently read this NYT interview with the actor Michael J. Fox, who has been living with Parkinson's for years and has a new memoir out. The memoir deals to some extent with his decision to stop acting (he says "not being able to speak reliably is a game-breaker for an actor”). So that might be something worth reading.

Jill Kinmont was a skier who had a devastating accident that left her paralyzed from the shoulders down the same week she appeared on the cover of Sports Illustrated. There was a movie about her accident and life afterwards called The Other Side of the Mountain. It looks like you can pay to stream it on Amazon. It's been a long time since I've seen it, but I recall it as a tearjerker. (There's a part 2 that's about her falling in love later in life.)

I also like Gilda Radner's memoir about her cancer called It's Always Something. The thing I always remember is that she kept seeing articles about her former castmates from Saturday Night Live progressing in their careers while she was just trying to stay alive.

I don't think I could deal with the changes in my life if I weren't in therapy. Having a therapist means there's someone in my life I'm not trying to emotionally protect from dealing with this. It makes a world of difference. It's great when I can feel grateful because things could be worse - and sometimes I truly do - but I often just want to have a full-on toddler kicking, screaming tantrum because I know so many people who aren't dealing with anything like this at all.
posted by FencingGal at 7:03 AM on November 18, 2020 [5 favorites]

It looks like there's also a book about Jill Kinmont.
posted by FencingGal at 7:19 AM on November 18, 2020

For me, this issue has led to a larger breakthrough - starting to let go of a fixed identity altogether. All these thoughts like "I am / am not a person who ---" are stories we tell ourselves that are limiting, even if they are positive. I like this article on the topic. Like another commenter, I have been discussing this with a therapist.
posted by beyond_pink at 8:34 AM on November 18, 2020 [2 favorites]

A friend recommended this memoir: Limbo by A. Manette Ansay.
posted by LobsterMitten at 7:33 AM on December 11, 2020