Creating a Positive Life While Living With Disability
by Kelly Ramsdell, Clarity Junction Guest Expert
I was diagnosed with rheumatoid arthritis (RA) when I was 371/2. I had experienced some pain in two knuckles on my left hand, and assumed I’d banged them on something, but about a week later, that pain was mirrored in my right hand, and I did some quick online research and went to the doctor.
The Journey of Diagnosis
It took several months to get a diagnosis.
My primary care doctor sent me to a rheumatologist, who ordered tests, including a nuclear bone scan.
Once my diagnosis was confirmed, I did what I always do when I want to learn about things: I went to the bookstore and found a book about it.
The author was a woman who had been diagnosed as a young adult and required multiple joint replacements by the time she was forty. She related how painful the condition was, how deformed some of her joints got, and how once, in pain and alone, she couldn’t get up to make it to the bathroom and had to wet the bed because help wasn’t nearby.
To say that the book traumatised me would be a fair statement.
I recall sobbing, certain that my hands were going to be gnarled, deformed things by the time I was forty.
I wanted a picture of them as they were then, so I’d remember what they looked like.
I worried about needing help to get on and off the toilet, or to move around. I was certain that life had changed forever, and it was all downhill from there.
Progression of Disability
I’m here to tell you that I’m now 56, and that while life has changed forever, it has been an exceedingly slow downhill process due to the improvement in medications that coincided with my diagnosis.
I have been on biologic medications since just a few months after my diagnosis.
The issue with these medications is that when they work, they work really well. So well that I sometimes forget I have an issue, until something causes it to flare.
However, sometimes they stop working for no apparent reason.
In that case, I’ve needed to switch medications, which is a bit like roulette: you are really hoping to find one that works for you.
On more than one occasion, I’ve spent six months to a year on a medication only to figure out that it isn’t really curbing the inflammation in my system. This results in physical issues that slowly worsen over time.
The good news for me is that my hands look pretty much the same as they did when I was first diagnosed. The bad news is that there has been some joint erosion in a few finger bones, and worse erosion in the joints of my left wrist.
As a result of these erosions, I sometimes have to be careful not to do too much with my hands.
It means that too much painting is an issue, which is rough because I am an artist.
Also, too much typing can aggravate my wrists and/or fingers. Holding a book or my phone too much also causes problems, which means that I occasionally have to wear a wrist brace, sometimes on both wrists at the same time. When they get especially bad, I have to ask my husband to hook or unhook my bra strap.
Disability vs Working Life
A few years into treatment for RA, my rheumatologist diagnosed me with fibromyalgia (fibro) as well.
As it turns out, autoimmune disorders like to run in packs, so it’s not at all uncommon for someone to have more than one of them, whether it’s RA, fibro, lupus, scleroderma, Sjögren’s syndrome, Raynaud’s phenomenon, or something else.
Back in 2002, when I first realized I could no longer work at my job as a litigation attorney, I was gutted.
I was, however, lucky, because my law firm had a terrific disability policy in place that meant staying at home didn’t mean I would lose my house.
I am well aware that not everyone with a disability is so fortunate and feel extremely lucky to not have to return to stressful employment, especially since stress exacerbates my conditions.
Living With the Terms of My Disability
Coming to terms with having a life-changing disability turns out to be an ongoing process. Even now, 18 years into my RA diagnosis, I struggle to deal with it.
On good days, when my meds are working, the weather is fine and my pain is under control thanks to daily pain medication, I can almost forget that I have it.
Conversely, on bad days, when my pain refuses to quieten despite my pain meds, or when I have a flare, it is difficult to function at all thanks to fog-like fatigue.
The worst part of a flare turns out to be the fatigue, not the pain—even though the pain can sometimes be debilitating.
When it comes to living with RA and fibromyalgia, the big issues for me occur on the swing days. These are days that start well but take a turn for the worse. The ones at the start of a flare, when I’ve forgotten that I have limitations. The days when stress intrudes, and I quite suddenly feel my joints or tissues begin to ache, or my fatigue level coming in like a fast-moving fog.
Despite nearly two decades of living with autoimmune issues, I am never not surprised when my autoimmune symptoms get loud.
I’d say there must be something wrong with me, but I also know I’m not alone in this.
We quickly adapt to whatever the new “normal” is, which is something I’m sure that the population at large is noticing during this coronavirus pandemic, as we all keep our distance and start to wear masks.
With my RA, it only takes a few good days in a row to start to forget the bad stuff: the aches and pains, the fatigue, the inability to find a comfortable position. And when that bad stuff comes back—and it always does—it catches me off guard. Every. Single. Time.
I am pretty sure it’s because inside our heads, no matter what the facts are, we hold to an image of ourselves as healthy individuals.
I know this is true for me. When asked how I’m doing, I will answer, “Great!” on a day when my pain level is at a 4 or 5 out of 10, because that’s not an actual bad day for me.
Keeping Healthy with Disability Is Not Impossible
One of the things I do to stay healthy is an extremely gentle yoga practice at home.
I love yoga. I first tried it in the ‘70s as a teenager in rural, upstate Pennsylvania by using a library book, and I was hooked.
I have gone to classes at various gyms and yoga studios over the past few years, and gamely tried to do all the things in their “beginner” or “easy” classes, only to end up with joint and muscle pains that let me know that neither my RA nor my fibro is okay with even that level of “rigor” or repetition.
My wrists don’t like too much downward dog, cobra, plank, or other weight-bearing positions, and I end up in braces and sidelined, so I’ve had to adjust my expectations, again and again.
Bringing Positivity to My Life
I occasionally resent my inability to do all the things I might choose to do if I didn’t have autoimmune issues, as when I can’t do a yoga class.
Overall, though, I am grateful for my present life.
I developed my writing skills in new ways after I stopped working as a lawyer, and in 2012, my first children’s picture book, At the Boardwalk, was published by Tiger Tales.
I began writing poetry, and won several awards for it, with several poems published in anthologies, including some National Geographic poetry books for children.
In 2015, I branched out and began to draw and paint.
I’ve got a small art business and sell original paintings as well as greeting cards. I have been able to spend more time living mindfully, to let go of some of the “shoulds” and “musts” that I had acquired over time.
I’ve found that framing things in a positive way, choosing joy, and letting go of expectations that do not feel good or make me happy has been a great help in dealing with my autoimmune conditions and disability.
I subscribe to the theory that we feed on what we focus on, which is why I focus on the positive as much as I can. It’s not that the negatives aren’t there, but I try not to dwell on them or give them more of my power.
Last year, I began to help other women to do the same, when I started my life coaching business, ‘Actually I Can’. As I say on the website, “my passion is helping other women find their way back to themselves through self-care, creativity, and adventure. Mid-life is just that: the middle. There’s still so much time to go—and you deserve to do things that bring you joy and pleasure—whether that’s a new creative outlet, making a minor or major life change, or getting to work on your life list.”
Kelly Ramsdell is a Life Coach and Founder of 'Actually I Can, Inc.', a platform dedicated to helping women fulfill their life vision through self-care, creativity and adventure.
Kelly loves teaching what she knows and helping other folks figure things out so they can “fix” them.
She also enjoys learning new things and practising daily meditation to keep herself grounded.
How to Contact Kelly
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Twitter : https://twitter.com/ActuallyICan2
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