How to be disabled?

November 3, 2011 2:51 PM

I know this sounds shit, but I need some advice on how to continue a satisfying life with a disability. Really long story as short as I can think to write it inside.

I was hit about 18 months ago with "back problems". It turns out I'm dealing with a constellation of auto-immune issues with a primary diagnosis of Ankylosing Spondylitis and sero-negative Rheumatoid Arthritis with a lot of peripheral and neuropathy involvements. I don't fit the standard profile for the disease: Close to fifty, female, B27 negative, but hey there it is.

Tonnes of axial and peripheral involvement and aggressive. It's been severe, persistent and recalcitrant and I've been on medical leave for around nine months. Hand function is currently diminishing including rapid muscle atrophy and we're still trying to find the underlying cause. I'm on biologics treatment at this point along with methotrexate, prednisolone and opiate painkillers. There's been some definite improvements with the biologics but not great. Basically, things are only nominally under control.

I'll reach the end of my company's standard medical leave benefit early next year. My company provides Salary Continuance insurance, essentially privately supported disability that I'll probably qualify for. With the partial response to the biologics, I've decided to try to return to work on a limited part-time basis to see where I am and whether I can be effective. Work supports this, but I don't know where it's going to lead. Work is as a management consultant, ironically to pharmaceutical and healthcare organisations.

Two years ago I was extremely active, mobile and energetic. I'm not now. But I have a really hard time thinking of myself as disabled. It's a huge shift in self-perception. On good days, I feel really guilty about not being a contributor. On bad days I deal with having essentially an invisible disease. If you met me randomly, I think you'd have a hard time knowing something was wrong. At this point, mobility and function are sporadically impaired but I haven't pushed myself within a work environment for a while.

I have a good medical team around me including an occupational and general therapist. I'm in Australia for what it's worth.

This is beginning to feel like a rant so here's the question. How do I adapt to my new circumstances? What are some suggestions around creating a fulfilling life, including daily stuff if normal working activities and commitments aren't there. Anyone else go from normal to not in their prime?

Anonymous because, while work definitely knows what's going on, I would still rather not have this discussion linked to my primary internet persona at this point.

posted by anonymous to Health & Fitness (12 answers total)

Therapy. A support group. Seriously.

This is not a small thing. You do not have to do this yourself.

The fact that you do not look like a disabled person does not change the fact that you are.

And I'm assuming this good medical team has helped and will help you think through when and how to limit and when and how push - you sound like the kind of person who does well with a plan. Make one! Heck, make a flow chart.

Sorry to hear about your diagnosis and I hope the return to working life goes smoothly.
posted by Lesser Shrew at 3:09 PM on November 3, 2011 [3 favorites]

I have AS, too. It sucks. I am still able to work now, but no doubt am the youngest person at my job paying for short-term and long-term disability insurance. I have adapted as many things as I can, from wearing comfy shoes that ease my foot inflammation to changing the angle of my chair so I'm reclining to simply saying "I am unable to attend evening work functions." So far, I am okay. So many other people miss work for regular viral type illness or kids stuff or whatever that my occasional absences have not been a big deal. I have had a contract work from home type job in the past and that is always in the back of my head as Plan B.

In terms of day to day life, the best thing for me has been having friends who are sympathetic and who understand when I have to cancel or alter plans because I'm just not up to it. Otherwise, the the biggest things that have helped me are biologics (yay drugs!) and swimming. Swimming is amazing. I used to be a runner, and coming to terms with that no longer being part of my identity has really been helped by swimming, which is also good for joint/spine/ribcage health.

Finally, it is run by a US organization, but members are from all over the world and just wonderful people: http://forums.spondylitis.org/. You will find more disease-specific ideas and advice there (although the spondy population on MeFi is surprisingly high).
posted by hydropsyche at 3:21 PM on November 3, 2011

My question on RA and exercise was pretty helpful. What I ended up doing with it:

- I finally went full-bore paleo, dietwise (no grains, no dairy, no legumes) for a month, and it made a world of difference. Seriously, went from relatively high-dose prednisone daily plus plaquenil to nothing at all and back in the gym like normal, plus I lost all the weight the prednisone helped me gain. Since then, I've figured out what I can get away with (corn sometimes, dairy if it's raw and/or non-cow, wheat never) and I feel good, have gotten my lifts back up to somewhere respectable, and feel much more in control.

- I also spent a couple months making a daily chart of how much pain I was in first thing in the morning, when I went to bed, what meds at what dose, whether and how much caffeine and alcohol I had, and how much sleep I got. It was a bit fiddly, but in conjunction with the dietary changes and exercise experiments, it was super helpful in narrowing down what thing had what impact.

I also have the advantage of being surrounded with people who don't push me when I say "Not today, joints are iffy." Which I still do sometimes - I'm mostly asymptomatic but if a storm rolls in or I cheat on the diet, I get pretty achy. They never make me feel like I'm letting them down, which is fantastic.

Otherwise, you know, life goes on. I had a emotional crisis along these lines last year, but really the only thing that worked was time.
posted by restless_nomad at 4:12 PM on November 3, 2011 [2 favorites]

Listening to the Ouch podcast has been very helpful for me learn more about disabilities. It's funny and educational.
posted by The corpse in the library at 4:12 PM on November 3, 2011 [1 favorite]

For me it was a process of accepting the change in my life. I was diagnosed at 36 with MS and worked for one year and then went out on disability. After therapy, support groups and trying different things out I found my way. I know things can change for me pretty quickly physically. I make plans anyway. I take classes and do volunteer work. I have come to love volunteering. I can chose what, where and when, and everyone knows my limitations so if I have to back off or need assistance of some kind it is not a stressor for the most part.

It was an emotional journey that I couldn't face on my own. I used all the resources available and got through it. I have a pretty decent life in spite of my limitations.
posted by cairnoflore at 6:11 PM on November 3, 2011

I forgot to add that I am now 58 years old.
posted by cairnoflore at 6:13 PM on November 3, 2011

I just got home from an event about living with disability, and one of the doctors who presented made a really inspiring case for focusing on your life rather than your disability. Think of the things you like to do, and find ways to continue doing them, even if the activities have to be modified or assisted or whatever. It's important to continue having hobbies, having relationships, getting out of the house and doing things you love. When you find yourself focusing on what you "can't do anymore," take that as an opportunity to find workarounds so that you can still do what you love. Focus on what you CAN still do, and don't be shy about using adaptive devices to help.

Maybe you can't run, but what do you love about running? If it's getting the fresh air, can you go for walks? Can you tool around the neighborhood in a scooter? If it's the exercise and fitness, can you doing something low impact like swimming or water aerobics? If it's the music on your iPod, can you come up with fun playlists to listen to while you're around the house? You've got to be creative, but it's worth it. Good luck to you.
posted by vytae at 7:33 PM on November 3, 2011 [2 favorites]

I'm 53 years old and have had RA for almost 20 years, but only severely in the last 3-4 years. I'm still able to work because it's my #1 priority, because work gets me my health insurance that pays for the monthly IV infusions that keep me functional. I am covered by intermittent Family Medical Leave Act time, which doesn't pay me anything but allows me to takes days/hours off when I have doctor's appointments or just need to go home early, without being penalized for having too many absences. In the last few months I've begun working second shift which has been a great thing for me, it allows me to have a slower morning (my worst time of day) and also to get my infusions and other medical appointments without stressing about how much time I'm missing from work. I walk with a forearm crutch (the kind with a band that goes around your forearm--duh) because I have a really wonky knee on one leg and a really wonky ankle on the other, which leaves me without a leg to stand on, so to speak. At some point down the road I will need a knee replacement and to have that ankle fused.

I could go on and on but, I say all that to say this, only in the last year have I "given up" and started using handicapped parking, the crutch, riding a mobility scooter places where one is available and I am investigating buying one of my own. But, the funny thing is, now that I have "given up," I am out and about, doing more, participating in more social events, and having more fun than I have in years. So, my advice would be not to think about all those as negatives, but to be happy to take advantage of them and allow them to help you get out and about and enjoy everything you can.

I'm no RA expert, but I've had it a long time and I also have tangential medical knowledge (I'm a medical transcriptionist and have worked in healthcare for 30 years). Feel free to MeMail if there's anything I left out or if you'd just like to talk.

P.S. Maybe I'm just more aware of it, but it seems like there's a lot of MeFi folks with autoimmune diseases -- we could start our own support group!!
posted by SweetTeaAndABiscuit at 8:51 PM on November 3, 2011 [1 favorite]

As it turns out, someone recently wrote the instruction manual for us: How to Be Sick, by Toni Bernhard.

I went "from normal to not" in my prime -- different career, different batch of autoimmune diseases, very similar story. It was a stunning shock in my early 40s when I had to stop working. What had been a very busy, active, productive, fun life was suddenly a void. My sense of identity, independence and efficacy took a real punch in the gut. But it turned out to be OK. Actually, I'm a happier person now than I was when I was still healthy. I'm not suggesting that the illness in any way made me happy, but it didn't prevent it, either. These are a few of the obstacles I had to step around along the way:

It took me a few years to decide that I'm entitled to be happy, even if I'm disabled. Just because I'm sick and unable to work doesn't mean that I'm required to suffer. I don't have to act miserable, and I don't have to apologize for my existence. Having an invisible illness doesn't require me to go around convincing the world that I'm Really Sick.

It took me years to learn that I didn't really need the sense of identity that I used to get from my work accomplishments. Now when someone asks me, "What do you do?" I say, "sometimes I sits and thinks, and sometimes I just sits."

Learning how to ask for help, and how to keep accepting it (sorta) gracefully, is still hard. I continue to be amazed at how willing other people are to give help when asked.

It has been very hard to tune out all the messages embedded in our culture that teach us that health = moral goodness; that lack of health is tragic; and that if a person is sick it must be because of something they did wrong. Especially if they don't get well again ("have you thought abut changing your diet? maybe you need more exercise"). Being sick is not your fault, and it does not decrease your value or the importance of your life. But some people will act as if it does.

I had to learn to take just as much pleasure from sitting on my porch with a good cup of coffee, or rubbing my cat's belly, as I used to get from working on "important" legal cases, or spending a day hiking in the woods. It's not necessary to work so hard at enjoying life -- a few good moments in a day are enough, and they're not really hard to find.
posted by Corvid at 9:40 PM on November 3, 2011 [17 favorites]

If I could favorite that last comment a million times ..... I would.
posted by blucevalo at 7:41 AM on November 4, 2011 [1 favorite]

I was a live-in carer for a very disabled client, a 20 year old student... not at all a similar situation, but perhaps you can spend some time with disabled people who have always been that way... they've had to build a life without experiencing what they couldn't have (I hope that makes sense!)... my client was never sad, just sometimes he wished he could do things like box... and he was never embarresed about personal care... things just were what they were... Before working with him I would have imagined things were hard for him (which they were) but his life was SO full!

BUT- at my training I asked what people were like that had spinal cord injuries- and the trainer said that coming to terms with accepting paralysis was like climbing a mountain, some of them made it to the top, others just to fall back down and climb again.
posted by misspony at 1:37 PM on November 18, 2011

"It has been very hard to tune out all the messages embedded in our culture that teach us that health = moral goodness; that lack of health is tragic; and that if a person is sick it must be because of something they did wrong. Especially if they don't get well again ("have you thought abut changing your diet? maybe you need more exercise"). Being sick is not your fault, and it does not decrease your value or the importance of your life. But some people will act as if it does. "

Seconding this and also recommend Sontag's "illness as a metaphor" it changed how I felt about my mom's cancer and the possibility of getting it myself.
posted by misspony at 1:38 PM on November 18, 2011