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How I Explain Rheumatoid Arthritis to Those Don't Have It

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How can I begin explaining the confusing, illusive and invisible debilitating autoimmune disease known as rheumatoid arthritis?

My name is Eileen Davidson. I am a 33-year-old female from Vancouver B.C., Canada. I would like to tell you I have been an esthetician for nearly 14 years, but my career was cut short at the age of 29 when I was diagnosed with autoimmune disease seropositive rheumatoid arthritis and placed on long term disability before my 30th birthday.

This is how I explain my disease to others and a few tips.

I am all for sharing the seriousness of arthritis in hopes that some day more is done to combat it. Disease awareness is important — it can lead to better treatment, research and, maybe one day, a cure. Also, it may open others up to showing chronic pain patients more compassion and understanding. But are others willing to listen?

Drop The Autoimmune Bomb

I find most people don’t hear the rheumatoid part but arthritis then instantly think of the most common type of arthritis; osteoarthritis which leads to thought of creaky joints in old people. However…

Rheumatoid arthritis and osteoarthritis are not the same thing.

Autoimmune diseases are when your immune system mistakenly attacks your other healthy tissues. With rheumatoid arthritis, the cells attacking each other begin in the joints with this fluid called synovium. When that becomes inflamed, that is where the trouble begins. The inflammation leads to pain, swelling, bone erosion and deformations, as well as can cause  damage to a wide variety of body systems, including the skin, eyes, lungs, heart and blood vessels. Because my immune system is compromised I have  harder time fighting off infections.

Other autoimmune diseases include lupus, diabetes and multiple sclerosis. These are commonly known and I mention them because I believe it makes them understand the autoimmune part a bit better, plus the seriousness of arthritis. It’s common to have more than one chronic illness at a time, including multiple forms of arthritis or autoimmune conditions tagged along with mental health issues like depression and anxiety.

Talk About Your Symptoms

Rheumatoid arthritis is much more than just joint pain. Talk about the fatigue, cognitive dysfunction, hard time fighting off infections. How do those symptoms affect you on a day to day basis? What do you struggle to do daily because pain or fatigue gets in the way?

Following Up with The Pharmaceutical Medication Bomb

We know the side effects and risks of the medications to treat rheumatoid arthritis. I am currently on a monthly infusion that could perforate my bowel! I wish pharmaceutical drug commercials did more disease awareness when advertising drugs for specific diseases. I wish they showed just how bad the disease can get.

Particularly to treat rheumatoid arthritis, there is a long list of different types of medications and even longer list of side effects that come with those meds. One of the main drugs to treat RA is methotrexate, which is a very small dose of chemotherapy. While small, it still comes with side effects like hair loss, increased depression, fatigue, vomiting, diarrhea, an even harder time fighting off infections and monthly testing of my liver. The medications are often as bad as the illness, but oh to not become even more disabled before I am 40 because of my progressive autoimmune disease…

Explain The Impact It’s Had On Your Quality of Life

It’s no lie that RA has had a tremendous impact on my life. It is important to remember that every case of rheumatoid arthritis is different. The younger the diagnosis the poorer the outcomes on their lives, though. I definitely thought I had more time, at 29, to live a normal healthy life where I could work, take care of myself, my son and still have energy for a social life, but RA robbed me of the ability to do the job I went to school for and has made basic daily life a struggle.

Share Articles or Videos

I’ve had readers message me to tell me they read my articles to a loved one so they would understand the disease better, which honestly is about the biggest compliment my writing can get. I’ve had many tell me they felt alone until reading my blog. You are not alone. If you look hard enough, we are out there.

The disease is often invisible, but just because you can’t see it, doesn’t mean we can’t feel it.

Some suggestions for them to read is The Arthritis Foundation or The Arthritis Society official websites. These are the main non-profit organizations in North America for arthritis. Everything stated is up to date and true.

Become an Advocate

I have had a significant reduction in BS from others since I become an advocate for my condition. Maybe they are too afraid to question an expert?

If you are interested in becoming an advocate, start by contacting your local arthritis charity chapter and volunteer as an advocate or ambassador. My first step was to become an ambassador with The Arthritis Society.You can also sign up for local patient advocate boards. I am a part of the Arthritis Research Canada‘s arthritis patient advisory board. If you are American there is the Arthritis Foundation and Arthritis Research National Foundation. Create a blog, YouTube channel, whatever you are comfortable with. There are many ways to advocate your illness and the benefits are tremendous for yourself and the disease!

Take Them To Meet Your Doctors

If they are close enough to you, maybe hearing it from a professional will help make them understand a little better. Ask them to come to one of your appointments with a specialist or take them to see you get an infusion.

And Remember, You Can’t Change People Who Don’t Want to Understand

If someone isn’t being supportive, compassionate or understanding of your condition, remember that chronic illness effects 1 in 4 people, arthritis 1 in 5, there might be a good chance that they will understand it at some point in their life, too.

You really don’t understand rheumatoid arthritis unless you have it yourself.

Getty photo by nathings

Originally published: July 5, 2019
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