Rheumatoid arthritis is painful — and so are many of the lessons I’ve learned over the years about living with it and explaining my condition to others in my life.
I’ve had RA symptoms for about a decade now, though I wasn’t diagnosed until about seven years ago. As an advocate who shares a lot about my condition through my blog, articles, and social media channels, I am committed to raising awareness about all the challenges and quirks of living a life with RA. I’ve shared how I explain my RA to others, how RA makes me feel like a bad friend, and how my condition affects my sleep, drinking, personal style, morning routine, and so much more.
But no matter what I am writing or Tweeting or presenting, the thing I care most about is shining a light on the major misconceptions people have about RA. There are many, but on this Rheumatoid Arthritis Awareness Day, the one that matters most of all is this:
Rheumatoid arthritis is serious. And we must start with that understanding, whether you’re a patient, caregiver, or provider.
This is important for everyone to know so that if they know someone with RA they can better support and understand them. And if they develop symptoms of RA, they seek the medical treatment they need. The sooner RA is treated, the better the outcome usually is.
There Is a Lot People Don’t Get About Rheumatoid Arthritis
The first painful lesson I learned about RA was accepting that I was just diagnosed with a serious and incurable chronic disease before I even turned 30 or had gray hair or wrinkles. The second was that my incurable disease is not well understood by or gets sympathy from the public. The third was that RA is plagued by so many misconceptions, which contribute to people’s lack of understanding and sympathy.
All this can at times cause many different mixed negative emotions.
Here is a short — and far from complete — list of the main things people may not realize about RA.
You can get RA if you’re young, healthy, and ‘don’t look sick’
This is by far the most common kind of comment I still get: How can you be so young with arthritis? or But you don’t look sick.
I even see this with people I know who assume that I’m doing better because I advocate, appear in the media, and gone through a health transformation. But the truth is that I am still fighting RA and it changes each year as the disease progresses.
Joint pain is only one concern that comes with RA
Perhaps because of the word “arthritis” in the name, people don’t realize that RA is so much more than just joint pain. RA does start in our joints — the body believes the linings of the joints are foreign tissue, so it attacks while damaging the joints, resulting in inflammation and pain. But that inflammation doesn’t just stop in the joints. It travels and affects many of our organs and systems, making RA so much more than just joint pain.
Over and over, I feel like I am explaining my mysterious symptoms like malaise, fatigue, brain fog, painsomnia, or why even touch can hurt me some days. The pain of RA can be felt throughout my entire body and mind.
RA is considered an autoimmune disease like lupus and multiple sclerosis
I’m constantly educating others that RA is a systemic inflammatory or autoimmune disease that not only attacks our joints but our organs like the heart, lung, eyes, kidneys, skin and more. RA is more like MS and lupus than it is osteoarthritis, which it is commonly mistaken for.
No specific diet, supplement, or amount of positive thinking will cure my disease
Not turmeric, not some trendy elimination diet, not yoga, and not positivity or praying. They each may help, but they’re not a panacea. Most of us need medication (and trial and error among various medications) to control our disease. Lifestyle changes are part of our treatment, but not a substitute. And what works for one may not work for another.
I am not a flake; I have a bumpy chronic illness
I might be fine one moment and feel like I can tackle the day. But I may end up paying for it later that evening or the next day — with fatigue and pain or even a disease flare. I can do everything “right” for my RA and still end up with a flare. And to be honest, doing everything it takes to manage living with RA is exhausting as is. I often don’t have extra energy for more than scraping by with the bare minimum done.
RA increases my risk for other serious or life-threatening illnesses
It is well-established that RA increases your risk for developing a variety of other health conditions such as cardiovascular disease, certain types of cancers, osteoporosis, lung disease, mental health conditions like anxiety and depression, and more.
Chronic illnesses are like chips, you often can’t have just one
If that is not exhausting enough, I also have to clarify what comorbidities (or co-occurring medical conditions) I have and how they are different from RA but cause me often just as much pain and discomfort. Some of these may be directly related to RA and others may not be. There’s a lot my doctors and I still don’t know. Every time a new symptom or health problem crops up, it triggers that “here we go again” anxiety about the detective work that lies ahead.
On top of my rheumatoid arthritis, I also live with osteoarthritis, fibromyalgia, endometriosis, anxiety, and depression.
RA significantly impacts quality of life
I am not going to sugarcoat it: living in pain sucks, always being dragged down by fatigue sucks, and living on disability instead of having work and a career sucks. RA is a very difficult disease to live with on a day-to-day basis. Being placed on disability at age 29 (as I was) isn’t uncommon for someone living with RA.
RA medications make us moderately to severely immunosuppressed, or at high risk for infections
When you’re immunocompromised, any sort of infection — from the common cold to COVID-19 — instills fear. Even if an illness is relatively mild, you worry that it can make your underlying disease worse, especially if you temporarily pause your immunosuppressant medication.
This fear has been especially heightened during COVID-19. For the past two years I’ve been living not just in fear of getting COVID, but also in fear of how COVID will affect my RA and how my RA could make COVID worse.
When I really put my finger on it, this fear is about lack of control and unpredictability — and the pandemic has added to this because we can’t control how other people respond to things like vaccines, masks, and safety measures. Those of us with compromised immune systems can do all we can to stay safe, but to live freely in the world, we need others to do their part.
The pandemic has brought out a new related fear: others not valuing my life because I am disabled and immunocompromised.
But the main thing people don’t understand is that RA is a serious disease
If you factor in all of the above, it’s really no question that RA is a serious disease. Yet people still don’t seem to understand that until they either experience themselves or see someone close to them go through it.
This needs to change.
Rheumatoid Awareness Day Isn’t Even a Decade Old Yet
The Rheumatoid Patient Foundation founded Rheumatoid Awareness Day in 2013, marking February 2 of each year to raise awareness for this serious systemic disease and to smash the misconceptions behind it.
Of course, when you live with RA, one day on the calendar is just that: one day. RA lasts a lifetime once symptoms start, even with treatment. But still, it’s an opportunity for advocates like me to share about these common misconceptions. It will take a lot of voices for everyone to recognize that RA is a serious disease.
Why this day needs to be highlighted
Rheumatoid arthritis is one of the most common forms of arthritis and arthritis is the leading cause of workplace disability in the world. While RA is most common in women and diagnosed usually between the ages of 30 and 50, anyone, any age, can get RA (even babies).
How you can be an ally to someone with RA
Being our ally and advocate can be as easy as three simple steps:
- Listen to us and reflect that RA is a serious disease.
- Support us through the bumps of chronic illness.
- Participate in and support advocacy, research, fundraising, and awareness for rheumatoid arthritis.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.