The many faces of rheumatic disease

Nikki Bhatti

Rheumatoid arthritis

_“I had just started university when one morning, out of nowhere, I woke up with my feet so swollen I could hardly get down the stairs. Soon after, I started having stiffness in my hands as well. When the diagnosis came back rheumatoid arthritis (RA), I was so confused. I thought arthritis was something that only happened to old people. I had a lot to learn.

For the longest time, I was pretty bad at taking my medications consistently. I think I wasn’t yet ready to accept that this was a health condition I was going to be dealing with for the rest of my life. And, because I wasn’t being consistent with my treatment, I’d suffer with swollen hands and feet, with fatigue, with pain, with all the other symptoms that I didn’t necessarily understand were related to my arthritis. This disease is so complex and unpredictable.

It was a big struggle for me to acknowledge that I needed to be active about managing my arthritis, and that I also needed support and accommodation. In a way, asking for support has been the hardest part. I’ve spent a lot of time feeling like I shouldn’t talk about this disease, like I should just try to live a “normal” life. I tried to hide how much I was struggling, because I didn’t want that struggle to be a burden on anyone else.

Download a rheumatoid arthritis discussion guide. 

Sometimes, these worries are unfounded, existing only in my mind. Like when I was on vacation in Japan with my family and I put myself through so much pain and discomfort trying to keep up with all the walking they were doing, even though I know they would have been so supportive and understanding if I’d spoken up. But other times, the pushback is real. I used to work as a bank teller, and we were expected to stand for our entire shift. I just couldn’t do it. I thought it would be so simple to say, “hey, I have this illness, can I get a stool to sit on?” But it was such a daunting process and it took months for my request to be approved. 

Even today, in a workplace where I’m able to get accommodations for my illness, I still sometimes face stigma because I look “healthy” on the outside. This can be an invisible disease. I’ve realized, however, that I have a responsibility to not only proactively stand up for my own health, but also to be visible to the world at large. When you look for arthritis information online, you don’t see any pictures of young Indian girls. So much of my internal struggle has stemmed from that first thought I had after being diagnosed, that this is an old people’s disease. I want people to know that younger people like me live with RA as well.”

John Warren

Axial spondyloarthritis

_“I was 31 years old and I was in so much pain I thought I was dying. It felt like somebody was constantly crushing my chest. I could never get a full breath in. The rheumatologist told me it was ankylosing spondylitis (AS), a type of axial spondyloarthritis (axSpA), all through my spine and all around my ribcage, and that I was never going to get rid of it.

I had two young daughters at home and I could barely do anything with them because of how much I was suffering. Knowing how much those little girls needed me was the only thing that kept me going. Otherwise I would have been ready to give up. I didn’t want to be alive. That’s how bad it was.

In the village where we live, the only kind of work is manual labour. So I was working through all my pain as a fisherman’s helper for lobster and crab fishing, lifting 150 pounds, 275 times a day. It’s hard work and it took a huge toll on me. I was taking so many painkillers every week just to knock the pain down to a level that I could tolerate. I used to love my job. I’d look forward to going fishing every day. But the pain took that away from me and I started to hate it. I started to feel like the work was going to kill me.

Download an axial spondyloarthritis discussion guide.  

It took two years of misery for me to get any treatment at all. And when they started me on medication, it only helped me for about two years. Then I was switched to another medication, then another, then another. Eventually every medication they put me on would stop working and I’d be suffering again, worse than before.

This struggle has also been hard on my marriage. And it’s been very hard on my kids—my two older girls who are adults now, and my youngest daughter who is just 11 and has seen me in pain her whole life. Because of them, I never gave up, I kept trying treatment after treatment. And now I’m finally on a medication that seems to really be working for me. 

My body’s been through so much that I’m always going to be in pain, but if it’s a level 2 instead of a 10, I can live with that. I’m glad I kept fighting as long as I did, and with any luck I’ll be around long enough yet to see my youngest graduate and maybe even meet a grandchild or two.”

Simmie Smith

Psoriatic arthritis

_“The first time I heard the word ‘psoriasis’, I was just nine years old. As a child of immigrants, not only was I the patient, but I was also the interpreter for my mom. I remember trying to explain to my mom what the doctor was saying and trying to process it myself at the same time. Those are such vivid memories for me.

The diagnosis was psoriasis, skin flare-ups predominantly on my scalp at first, but later all over my body. I got a prescription and, being South Asian, there were also all kinds of home remedies my mom thought might help. I suffered a lot through high school. I was teased and the lack of knowledge and education left kids and teachers with the impression that I was contagious.

Then, in my early twenties, the joint pain started. At first I didn’t associate it with my psoriasis at all. But later I learned the pain I was feeling was actually psoriatic arthritis (PsA). My joints were completely inflamed. This wasn’t just about my skin anymore. I decided it was time to make lifestyle changes.

I started eating better. I started getting more active. I went to bathe in the Dead Sea. And, amazingly, it was helping. Soon I was running half marathons, then full marathons. I started golfing. It was absolutely incredible. My skin had cleared up and my joints were feeling much better. I was starting to think I’d beaten it, that I’d cured myself.

Unfortunately, the flare-ups had returned worse than before. The pain was unbelievable. In my feet, in my hands, in my hips, in my knees. I stopped being able to do all the activities that had become so important to me and I’ve learned this condition never really goes away. It takes an emotional toll, wondering if there will ever again be a time when your calendar isn’t full of medical appointments.

Download a psoriatic arthritis discussion guide. 

We become very complex patients, and we learn to tolerate a lot. We tolerate pain and discomfort. We tolerate medications until we can find one that works for us. We tolerate a real lack of understanding of this condition, not only from the people around us, but sometimes even from our health care providers.

But we also find our way forward. When we take an active role in our own health, there is so much we can do. With all the research that is happening, there are more possibilities than ever before. And medication is also only one aspect of our treatment. Each person’s optimal treatment plan is multifaceted and unique. I know this from my personal journey, but also from the many many others I’ve met as board president of Psoriasis Canada. That’s why it’s so important, as patients, that we be empowered, well-informed, and always ready to act as our own interpreters in every way.”