Coping with disability
October 10, 2019 6:12 AM   Subscribe

Being disabled doesn't fit my internal narrative as a high achieving, fitness oriented person. I am in therapy and we are addressing this, but I wanted to hear from others that transitioned from able bodied to disabled physically to see how you made that process happen on a mental level.

My autoimmune conditions are getting worse. I am often crawling up the stairs to put my toddler to bed. My spoons are running out faster. I will be registering for a disabled parking plate later this month. I am trying to modify my work situation so that I can keep working full-time without having to start taking more sick days. I am having a hard time processing this change in functioning. I've always been a "push yourself until you succeed" kind of person. Autoimmunity laughs in your face when you do that.

I am very upset at the idea of getting a disabled plate, but there are days that I just don't go get something that I need because I don't feel like I have the strength to walk in and out of the store. Even at work the days the closer spots are taken, I try not to cry because it uses more spoons to park farther away.

I used to be a person that parked far away on purpose because that's a great way to incorporate exercise into your life. Now, I'm scared to bike at the gym longer than 30 minutes because even going 45 minutes gives me great endorphins and is awesome for my mental health but my body punishes me for the next 2 days.

I have ample support at home. My spouse takes over bedtime frequently, helps with cooking and cleaning, but I'm trying to still pull my weight to my best ability as he also works full-time in a physically demanding job and has health issues of his own.

I have already automated and simplified to the greatest extent possible for my financial resources, I'm pretty sure. I leave the mess and focus on cleaning to reduce pests etc on the bad days. I outsource groceries altogether and get them delivered or pick up curbside. I do 99% of my shopping online. I try to anticipate everything I need to do in a room before I get up so I have economical energy expenditure.

I don't object to responses that offer additional ideas in this area of automating/simplifying, but I think I'm doing all I can without more money.

So, I'm in a phase of transition, already undergoing pretty aggressive medical treatments, the only other option being a chemo drug (technically a DMARD for that prescribed purpose). My doctor kind of sucks.

But please assume I'm doing the right things medically, and try to focus responses on acceptance, grief, etc.
posted by crunchy potato to Health & Fitness (15 answers total) 31 users marked this as a favorite

This personal story David Rakoff told on This American Life is about his coming to terms with cancer and disability. I heard it when it first aired, and I return to it from time to time. His grief and acceptance both come through.
posted by Former Congressional Representative Lenny Lemming at 7:04 AM on October 10, 2019 [2 favorites]

I'm sorry that you're dealing with not only the health challenges but also the hard emotional ones, too. It sounds like you are doing everything right in terms of trying to adjust both your life and your attitude while also giving yourself space to grieve.

I don't know if this perspective helps at all but we all eventually have to slow down a bit. A mindset of "push yourself until you succeed" is do-able and even ideal when you're in your teens and 20s but after that it becomes more of a liability, you know? So you would have to adjust anyway, it's just that the transition is just coming earlier and for an extra shitty reason.

You and your husband are a team and you are good to want to "pull your weight" but that's insinuating that to do any "less" is to be a burden. That nagging voice is ableist society telling us we are less of people or partners or parents for having physical or emotional limitations but that's complete bullshit. In fact, you could argue that you are now even more of a more compassionate and patient parent and partner than ever!

Take those sick days as needed! That's what they're there for: as someone who spent years not taking sick days as if they were a badge of honor, I realize that was total bullshit and mostly for my ego. I know you want to save them for when "really needed" but resting up now could help you from being even more drained later and, therefore, needing even more time off. Please give yourself permission to simply, not just your tasks but the expectations of yourself. You are doing great!! I am sure of this. Simplifying your life and doing "less" does not mean you're actually doing less, right?

Two Instagram accounts I recommend are the amazing Rebekah Taussig and the awesome Nedra Glover Tawwab. Also, I'm a big fan of the BCC podcast Ouch! Disability Talk.

I'm glad you're in therapy and are working through things with them. If you are satisfied with your current therapist, then great! However, if you are feeling you have different needs in this period of your life, please remember that you can find someone who is more specialized and experienced in helping people with the emotions around disability. I did this when I started focusing on my mental health disability of PTSD and I cannot tell you how good it feels to feel truly and finally understood.
posted by smorgasbord at 7:05 AM on October 10, 2019 [13 favorites]

One of the things my aunt, who has lived with an autoimmune disorder for 30+ years, shared with me when I was dealing with health issues was to stop fighting the disbelief and change. She told me that it turned out to be less work to let go of the old ideas of could and should because she had limited energy to go around as it was. She went from being a nursing supervisor and teacher with two children to early retirement and strict budgeting of her energy. I think some of her peace and equanimity was found through her religious beliefs, but her overall message to me was not one of faith, but one of acceptance--this is where you are; don't struggle against your current self.

You may find these helpful:
ChronicBabe forum and blog
Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch
posted by carrioncomfort at 7:24 AM on October 10, 2019 [10 favorites]

This article is great: “You Do Not Exist To Be Used”: Why Your Life Purpose Is Bigger Than Capitalist Productivity. Also check out their other writings on disability and her book The Body is Not an Apology.

In general, I really recommend reading up on the social model of disability. "For many people with disabilities, the main disadvantage they experience does not stem directly from their bodies, but rather from their unwelcome reception in the world, in terms of how physical structures, institutional norms, and social attitudes exclude and/or denigrate them."
posted by veery at 7:24 AM on October 10, 2019 [14 favorites]

Having a disability doesn't mean you're doing less, it means you're doing more. You have to spend more effort and energy to do the same tasks.

Mefite Matildaben just posted this great article in a thread about strenuous hiking: How to tell your trail partner to slow down- it might help you reframe things.

You definitely deserve to be able to save energy on meaningless things like walking across a parking lot, so you can spend it on more useful things, like... well, literally anything else!

Our built environment contains needless hurdles (stairs when there could be ramps, convoluted paths, extra distances, not enough seating, awkward bathrooms, etc) and being able to bypass those should be the norm, not the exception.

Follow some social media accounts of people who talk about disability and barriers- they are really eye-opening. Check out:
Imani Barbarin,
Rebekah Taussig,
Luke Anderson,
Matthew Cortland,
posted by nouvelle-personne at 7:42 AM on October 10, 2019 [7 favorites]

Have you considered a support group, perhaps one online on (ugh) Facebook? I have a number of friends who have significantly more serious issues than my relatively mild ones, and many of them seem to gain a lot of comfort from talking to other people either with their condition or just physically limited. In addition to giving you access to people with experience managing, I think it helps to normalize the change, which is so hard.
posted by praemunire at 7:59 AM on October 10, 2019 [1 favorite]

Yeah, it's not fun to communicate effectively to others that yesterday you climbed the stairs, next week you may climb the stairs, but today this just ain't happening. And you realized it would be this way an hour ago, not while having breakfast this morning. The whole invisible handicap thing sucks.
Short of "Eyeglasses off -- I'm Superman/Wonder Woman!" and "eyeglasses on -- random person here, leave me alone," I don't know how a person can signal to the world in general that -- this day? This is not a good day.

Luckily, society and the business world are more in tune with the idea that you can take that sick leave, you can request accommodations in duties and work schedules, and that the handicapped parking spaces are there for your convenience. It takes a mental shift to realize that the perks of senior living have arrived before your first gray hairs, but by golly, take them! You worked for it, you earned it, and it's paving the way for the next random person in a hoody that just wants to get a little respect for making it all the way through a shitty day. Even if they don't present as being disabled, because some of us don't.
Claim your space.
posted by TrishaU at 8:46 AM on October 10, 2019 [7 favorites]

One of the things that's helped me (I was a very physically active teenager including some national level competition, and it's been increasingly complicated since then, with autoimmune stuff.)

I've found a lot of benefit in figuring out what things are my highest priorities - not tasks, but values. So, for example, I value using my brain, and I have found that if I take the stairs up, I get about 15 minutes less brain that day. So I don't unless there's no option (or the option is nearly as much effort to get to.) Stairs down are fine. That way I'm more able to do more of the stuff I value, and the stuff I can't do or have to turn down, or have to do differently is a little less about "I can't do this" and a bit more about "I'm making this choice so I can do more of this other thing."

In the same vein, my big piece of advice is to look at ways to reduce the number of times you have to move stuff around so you can do necessary tasks. Things like: have a set of cleaning equipment upstairs and downstairs. Figure out the easiest/safest way for you to move things up and downstairs (and what stuff can wait for your husband). Figure out if there are food options for everyone that take minimal prep and cleanup but are still reasonable choices.

And yeah, sometimes the "If I take a sick day now, then my life will not spiral into chaos" is often a good plan - sometimes that (or a vacation day) means I can get ahead of cleaning or do seasonal tasks, and not be overwhelmed by it.

Finally, it does involve money, but when I've had worse stretches, having someone come in to do the heavy cleaning once a month has been an absolute game-changer for me. It takes me from constantly behind to being able to keep up with the daily stuff because I don't have to budget time/energy/spoons for the bigger tasks.
posted by jenettsilver at 9:17 AM on October 10, 2019 [8 favorites]

A couple things I did, under the general idea that my new job is managing my health condition:

1) Used FMLA and the ADA to negotiate adjustments to my work schedule, which was easier for me because I'm an attorney, but a consultation with an employment law attorney should be able to help you figure this out fairly quickly.

2) Got an attorney for SSDI and filed a claim. Ignored everyone who suggested that I should be able to do it myself, because nope, I have had plenty else to deal with in terms of managing my health condition.

3) Recognized that health care can be a fragmented mess, and I can get second opinions and consult with other doctors who specialize in specific aspects of my complex condition. Coordinating my medical providers has become the most important job I have.

4) Contacted local nonprofits and government agencies to figure out where benefits were located, including transportation, food, utilities, in-home care assistance, etc. This can be challenging, but I've tried to approach it like a job. I'm now also working with Vocational Rehabilitation to find work that I can do with my limitations.

For awhile, I kept pushing myself really hard, and kept trying to go back to work, but I kept ending up in ERs and the hospital. Every time I qualify for a benefit related to my disability, I still have a fair amount of emotional processing to do, because it is still hard to accept the loss of what I was previously able to do, even though I am grateful for the support I receive.
posted by katra at 9:33 AM on October 10, 2019 [8 favorites]

For me, I needed to work through a grieving process to finally adjust.

When I was first diagnosed with a condition that would lead to total kidney failure, I had doctors who focused only on the physical aspect of the illness, and I had well-meaning family who adopted this relentlessly sunny chin-up attitude. There was so much emphasis on staying positive (STAY POSITIVE! STAY POSITIVE!) that I never really took time for myself to adjust.

It took an especially insightful PA to see my situation for what it was, and to say, "Hey, this sucks. Your situation sucks, and I am sorry this is happening to you."

And that was an epiphany for me. I was able to start grieving and close out the phase of my life as it had been. I allowed myself to give myself time to think about my past and my accomplishments, my mistakes, my victories, my relationships as a healthy person, my travels and my career. And as I came to peace with it, I was able to put them up on a shelf where I can admire them and give myself the room and space to start a new phase.

I figure that current me can't compare to healthy me, so I needed a new set of rules, realistic rules that fit how my life is now. Comparing your current abilities to your past life only leads to unhappiness.

And in a weird way, it's been a way to reinvent myself, to allow myself to realize that I can live extraordinarily well when the rules are adjusted sideways to new standards. Instead of trying to be the healthiest healthy person I can be, I try to be the healthiest sick person I can be. There's a world of difference. I admit I do tend to compartmentalize a little -- at the clinic, I'm sick, but at home I'm just a tired version of myself. But having grieved and survived that grief, I'm pretty happy now. I don't accomplish what I used to, but I think I'm more patient now. I listen more. I try to be kinder. I can't go trailrunning or hop on a flight to London, but I can be more loyal, more loving, more honest, more warm.

A quick note: I find that I do better when I steer clear of spoonie forums and online/in-person support groups. Lots of people find them genuinely helpful, but I think the concentrated focus backfires for me. I wanted to mention this just in case you are experiencing a similar reaction because it baffled me for a long time.
posted by mochapickle at 9:53 AM on October 10, 2019 [15 favorites]

lots of good stuff so far.

What has worked for me (and it took a while) was to focus my energies not around dealing with the specifics of my disability (meds, exercise, treatments, support groups etc -- all important stuff for sure) so much as to step back a bit and set goals as to what kind of life I was going to live. Given my new limitations, what could I still do, and how?

And this really was a turning point. Because then it wasn't about the affliction -- it was about living a life that mattered to me. The affliction hasn't gone away, but it has receded somewhat in terms of the focus it demands (the energy I give it). It's a new normal and it mostly works.
posted by philip-random at 10:23 AM on October 10, 2019 [7 favorites]

One of the biggest things that's helped me adjust is making art about it. I process pretty much everything with art (I don't find therapy helpful, counter to much of AskMe's advice) so I just bust out the supplies and draw how I feel and how frustrated I am that I can't (probably ever) ride my bike again, or the various other things that I have to weigh out and usually decide against doing because the cost is too high. I've also learned to shift priorities: doing the dishes is boring and it'll eventually get done, but hanging out with my cats is awesome so I focus on that.

I know there's a lot of pressure from society to just be positive about everything, but it's really okay not to be. It's okay to be upset about this stuff because it's awful, losing your capacity to do normal things is alienating on multiple levels and you don't need to beat yourself up in addition to the damage that the disease is doing.
posted by bile and syntax at 10:24 AM on October 10, 2019 [4 favorites]

I recently talked about my sad cake here and actually brought it up with my psychiatrist at my last visit, who loved the idea so much that she asked if she could tell other patients about it, so now I feel even better about recommending it.

I have clinical depression that is well-controlled with medication, but I am also disabled, and that causes periodic situational depression. Because of course it does! It sucks not being able to do things you used to. I’m ok with not driving 97% of the time, because I know it’s a safety issue and it’s everyone’s best interest for me not to risk falling asleep at the wheel, but the other 3% of the time, it really gets me down. I’m human. When that situational depression hits, I buy myself a particular cake, my sad cake, and let myself feel sad until I’ve finished eaten the cake. When the cake is done, it’s time for me to move on. This gives me a chance to sit with my sadness (usually two days), clues in my family that they need to be gentle with me, and, as a bonus, I get cake!

A sad cake doesn’t need to be a cake. Anything can be a sad cake as long as it gives you a healthy and time-bound way for you to sit with the sadness while also giving yourself comfort. The point is to own the sadness, acknowledge it, and not fight it. The harder you fight it, the harder it is to let go.

Acceptance is hard. But I eat less sad cakes now than when I was first diagnosed, FWIW.
posted by Ruki at 1:25 PM on October 10, 2019 [17 favorites]

It's no longer active, but the FWD Feminists with Disabilities website really made me see how misogyny and ableism went hand in hand (in terms of patrolling, labeling, and judging people's bodies) and very much opened my mind to how much Western society tends to equate worth with productivity and why that's a feminist issue. Might be worthwhile poking around in the archives!
posted by lazuli at 9:56 PM on October 10, 2019 [2 favorites]

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