By: Julie Beausoleil
Wednesday, June 16, 2021
A Tough Realization
I’ve never considered myself disabled - I perform daily tasks, rarely need accommodations, exercise on my two feet, and manage my pain, despite dealing with this incurable disease - Juvenile Arthritis (JA). But a couple of weeks ago, I had a tough realization.
To give some context, in regards to my arthritis, I take two weekly needles of Enbrel —a biologic medication. When I received my Pfizer vaccine, I was advised to skip my arthritis medication for two weeks in order to ensure the vaccine would work effectively.
(Note: people have received different recommendations regarding COVID-19 vaccines and medications, so this advice does not apply to everyone. Please consult your doctor if you have questions or concerns!).
On the day I was set to receive the Pfizer vaccine, I was already due for my next dose of Enbrel, but I still had to wait those additional two weeks after receiving it. This means that I went almost three weeks without my medications -- I definitely could have planned that better.
However, I did not expect my body to change much. My mind justified this thought because recently I’ve been managing my pain very well and haven’t had a bad flare up in years (which I am very thankful for!). My last huge flare up was about 5-6 years ago when my rheumatologist suggested that I try going off my meds and into remission. My body did not handle that very well to say the least. At the time, I was already dealing with sport injuries that my body had a hard time healing from. So when I went off my medication, the pain from those injuries combined with my arthritis flaring up, resulted in extreme joint pain.
I came to the realization that medication was a vital part when it came to managing the disease activity. I went back on my meds after about two months, which enabled that big flare to settle. Since then, my pain has been fairly manageable, as I’ve only endured minor flares alongside my regular pain levels.
Taking my medication became so regular that I believe I subconsciously attributed my lower pain levels and pain management capabilities too much to myself - I thought my arthritis was simply ‘getting better’ even though I knew deep down that it probably wasn’t that simple.
Consequently, when I took the Pfizer vaccine, I didn’t think too deeply about the effects of skipping my Enbrel doses for a few weeks. During the first week after receiving Pfizer (and my second week without medication), I had some pain but I was okay. However, the next week was a totally different story. My body deteriorated very quickly and resulted in pain everywhere. Simple daily tasks became extremely challenging. For instance, sometimes when I’d walk, I’d have to fully lean my weight on surrounding objects because my knees couldn’t handle standing. Other things I took for granted, like getting in and out of my friend’s car, standing up straight, or stepping out of the
shower, became very stressful and difficult. I had to adjust all of my plans, rely on my family and friends, and resort to pain management methods I hadn’t touched in years (braces, wrapping my knee, constant icing, etc.).
I realized that I was disabled for that week. This also made me realize the extent to which I depend on my medication. In order to live my life the way I want to, my medication is 100% a necessity. This was hard to accept; I thought I was doing it on my own.
That being said, this also put into perspective how lucky I am to have a medication that works for me. Once I went back on my medication, my body slowly started improving again. Medication literally changes my daily life and drastically improves my pain levels. Many other people with JA are not so fortunate and haven’t found a medication that works for them.
I know how difficult it can be to deal with those extreme extents of pain, and I am so grateful to have the privilege of a) having access to medication and b) having a medication that works. I truly hope anyone who doesn't have either of those two aspects can find a way to manage their condition or attain those elements, although I know that’s not always possible.
The Juvenile Arthritis community has been growing, especially through resources like Take a Pain Check, Cassie+Friends, Camp Cambria, The Arthritis Society, etc. These support systems are key to living with a chronic illness.
Although this blog post doesn’t really have a happy ending or a key takeaway, I hope someone can resonate with these feelings that I’ve been struggling with. Managing a chronic illness definitely has its ups and downs, and can cause a wide variety of emotions, so I think it’s important to acknowledge these thoughts.
If you have anything to add to this conversation and want to share any feelings/experiences you’ve dealt with because of a chronic illness, please submit a blog proposal! Your ideas are welcomed.
Thanks for reading!
DISCLAIMER: This is my personal opinion. I am not a doctor. What I experience is likely very different from what you or anyone else will experience. I simply want to promote discussion and by no means am telling you how to feel, or how to treat your condition. Thanks for tuning in!