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Life & Lessons of an Arthritic Youth

by Ashley Steel |

It’s hard to tell the story of my journey with Rheumatoid Arthritis (RA), shy of a memoir. This is less of a clinical story, and more of a cultural one. But in the spirit of what my friends fondly call my “geriatric condition,” ain’t nobody got time for that!

So let’s fast forward down memory lane:

At 18 – after coming off a grueling track season – the pain in my legs was excruciating – from hip to knee to ankle. The doctor told me I was exhibiting signs of overwork and on the verge of stress fractures. I would “be fine after some rest,” he reassured me. While the pain in my legs seemed to be abating in the weeks following my appointment, I began to experience other unusual symptoms. I would wake up with swollen, achy joints (nearly doubled in size), and stiff, locked fingers that I couldn’t bend. But being young, dumb, and almost off to college, I mostly thought these were cool party tricks to impress friends. (Sound familiar? Read these common signs of RA.)

As the symptoms progressed, I found that I couldn’t complete the same, everyday tasks that I was used to, without experiencing a great deal of pain. By the time I started having to bear-crawl up the stairs (to reduce the amount of pain I was in), it became clear that I was not, in fact, getting better. It also turns out this unconventional method is not a great first impression to make while touring prospective colleges (facepalm). In addition, I had developed what my father called, “the distinct shuffle of an old woman.” I lost the ability to hold a fork, or a pencil, and I began to struggle with the fasteners on most clothing. Unfortunately for me, this was just before “granny chic” became the preferred fashion statement of ironic post-hipster youth (large velcro sneakers!). I really missed out on that one, huh? But all jokes aside, it would have saved me a great deal of pain and frustration had there been more adaptive clothing options available at the time.

Roughly one year, a million doctors, and 2 million needle pricks later, I was diagnosed with Rheumatoid Arthritis (RA). RA is an autoimmune condition in which one’s immune system attacks itself at the joints, which can ultimately cause bone erosion and joint deformity. Hooray! *Sound the trumpets, and cue the confetti* Due to the extreme fatigue brought on by this condition, it took me a long time to process what this actually meant. Mostly, it seemed to confirm my worst fears as a teen – that I was so extremely uncool that even my own body was rebelling against me.

At this point, I was clinically and legally disabled, and it took the next three years to find a treatment that allowed me to live a mostly functional life. During this time, I was required to go to an ophthalmologist as one drug we tried had a known side effect of blindness. Another drug was a form of chemo that made my hair fall out, yet another drug was a steroid that made my cheeks look like a chipmunk storing acorns for the apocalypse, and the last was a painful, self-administered shot from the world’s thickest needle. The real Catch-22 was that I was now immunocompromised, a necessary evil, as a suppressed immune system meant that my body would no longer have the strength to attack itself, but would also not have the strength to defend against the common cold. 

More than the physical pain brought on by RA, I was most affected by the emotional trauma. A former athlete with college prospects, and a straight-A student with a relentless work ethic, I now found myself sleeping more than most stoners I knew. Unable to exercise due to the pain, I was constantly harassed by my peers and even adults who couldn’t see my illness. They would say things like, “it’s all in your head,” or “my grandma has arthritis in her thumb, and I don’t hear her complaining.” My brain was in such a cloud that I found myself re-reading simple sentences at least three times before I could even process the words. At 19, I found myself wracked with anxiety at the thought of being able to hold down a job on account of the pain, let alone a fulltime job with medical benefits to treat my expensive condition. In addition, RA robbed me of the stereotypical college experience -while my friends were out partying and experimenting with drugs, I was at home on a Saturday night popping ten prescribed pills just to stay functional enough to turn the pages of my textbook. I had no allies in my invisible struggle. I knew no one else my age with RA, let alone any autoimmune condition, and could not find local or online support groups. I gained 30 pounds, and I became depressed. The most quintessential part of this experience was that I had no idea who I was; the only thing I knew myself to be good at was sports, and this was no longer an option.     

In the next nine years, I did a lot of mental gymnastics surrounding grief, identity, empathy, and purpose. Now, as I “celebrate” 11 years of life with RA, I can reflect on the experience with gratitude and pass along a few insights that helped me on my path to healing:

Invest in Yourself
It took me too long to realize that just because I was good at one thing, didn’t mean that I had no other talents. When I was no longer able to play sports, I spent a lot of time watching my muscles atrophy, thinking that I was destined for a life of mediocrity. That kind of thinking is not productive or helpful.

After many wasted years, I finally decided to invest in myself. I took workshops on things I was interested in I left a stable career in a field that left me feeling morally bankrupt at the end of the day, for a more rewarding job with a smaller paycheck. I tried things that scared me, and while I’d still rather look out at the ocean than swim in it, it turns out that pole dancing is actually a ton of fun. I now use painting as a way to explore my unchecked emotions and sewing as a way to make products that help people with chronic health conditions, and I LOVE IT. 

Seamstress at Abilitee Adaptive Wear

Invest in yourself – though not all of your trees will bear fruit, you will one day find yourself with an orchard.

Changing Perspective
I spent a long time thinking about the things that had been “taken” from me as a result of my illness, instead of focusing my energies on the mountain of things I did have.

Is it okay to grieve? Absolutely! Is it alright to experience frustration, anger, and loss? Of course! But it’s also imperative to move on. You can do life, or you can live life; it’s a choice we get to make every day when we wake up. To do the latter, you have to appreciate the cards you’ve been dealt and do the best with what you have and where you’re at. It’s not always easy, and it’s not always fair, but sometimes – if you tilt your head – those cracks on the wall of your rundown apartment are actually a beautiful piece of art.  

Choose Opportunity over Anger
When you’re living with a chronic condition the rest of the world can’t see, it’s easy to see yourself as a victim, and develop an “us vs. them” mentality. Many people will be misinformed about your condition, others won’t believe you, and almost certainly you’ll meet people who will make an ignorant joke, utterly unaware that they’re talking about you. 

For a long time, when I encountered these situations, I used it as an opportunity to get on my soapbox and lash out. It turns out that’s a terrible strategy for effecting change, and a great strategy for losing friends – surprise! I’ve learned over the years that vulnerability and compassion go a lot farther than my anger. By abstaining from criticism, and instead of offering up an account of my experiences, I find that people take the initiative to ask thoughtful questions and even share something about themselves that I wasn’t taking into consideration. The world is not out to get you, but it does want to get to know you.

Consider Compassionate Healthcare
What I didn’t realize at 18 is the extreme privilege of having quality medical insurance at the onset of my condition. (Thanks mom and dad!) Some of the treatments I used at the time were relatively new, and still under patent. As a result, the ability to price gouge due to the lack of competition was astronomical. (Think $1,000 per dose without medical insurance for a drug that I needed to stay functional). Access to quality healthcare saved my life.

When we exercise our civic duty to vote on legislation surrounding healthcare, it’s important to exercise compassion and remember that healthcare is an opportunity to elevate and empower people -not an opportunity to take advantage of others.

 

    Want to know more about Rheumatoid Arthritis? Here are some resources, blogs, and communities on the subject:

    CDC - About Rheumatoid Arthritis

    Chronic Eileen

    Carla’s Corner

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