One Woman on the Stress of Living with Chronic Illness During a Pandemic: 'It's OK Not to Be OK'

Rheumatoid arthritis is a painful, debilitating and often-misunderstood disease. Courtney Brisco, a 30-year-old former medical assistant from Little Rock, Arkansas, gives her first-person account of what it's like to live with the chronic illness, as told to PEOPLE

Courtney Brisco
Photo: Courtesy Courtney Brisco

The first time I knew something was wrong was in 2014. My parents were out of town so I stayed to watch their house. It was a Sunday, I tried to get up to go to church and my arms were stuck. The following week, I went to my primary care doctor and she said she didn't know what was going on. They eventually ran a test called the R [for rheumatoid] factor. Your R factor is supposed to be less than 14 and mine was 97.

In 2015, I discovered I had rheumatoid arthritis, which is basically when your body's immune system attacks itself, causing your joints to inflame. I went to see a rheumatologist and they started me on a medication for it. When that didn't work, I started to take another medication which was a form of chemotherapy. So they start you out at a low dose of one pill a week and then it gradually increased to seven pills a week. When that stopped working, I started taking another medication, which I inject.

Rheumatoid arthritis, it's a life-changing deal. Most people look at you and think, "You don't look sick." But they don't understand it. Rheumatoid arthritis doesn't just affect your joints. It affects every major organ in your body. From headaches to back pain, to fatigue, depression, anxiety — it affects everything. A lot women with autoimmune diseases also have smaller autoimmune diseases that tag along with it. I also have something called Sjogren's disease which causes dry mouth and dry eyes. So I have two illnesses basically fighting my body for no reason.

From the end of 2018 to 2019, [things got worse] so fast. On January 3, 2019, I found out I had something called Chiari malformation. This is a condition where your cerebellum protrudes out of your skull, causing pressure on your spinal cord. If it's not taken care of, you can be paralyzed from it. So with having Chiari malformation, the doctors didn't want me to take any of my RA medications because they can weaken the immune system and therefore would have delayed my healing after the operation.

On January 28, 2019, I had a craniectomy, and from then on my life has drastically changed. I ended up having to get a shunt because I formed hydrocephalus caused by meningitis. I tried to go back to work in May of that same year and it failed. And I started to retain fluid again, and I kept hearing a ringing in my ears with really bad headaches.

In August of 2019, I ended up getting E. coli from another surgery. While going through all of this, I couldn't take any medication for rheumatoid arthritis. So I was recovering from brain surgery, back surgeries, E. coli, hydrocephalus, and rheumatoid arthritis, all at the same time. My last surgery was in May 2020. And when you have joint damage, there's no reversing it at all.

When I first started going through this stuff, I did not realize that I was suffering from PTSD. I stopped eating because, while every girl and every guy I knew was out enjoying themselves for the past two years, I was in and out of the hospital. I gained some weight, I did not look like myself, and I was just thought, "forget it."

My therapist tells me, "It is OK to feel sorry for yourself and to sulk in and deal with what you're dealing with. But you don't get to live there forever." I don't discount what I'm going through, but I do know that I'm not the only person that's dealing with it. I would tell anybody that is dealing with RA or any type of invisible disease to get a therapist.

Courtney Brisco
Courtesy Courtney Brisco

I have a great support system through my parents, friends, and boyfriend. Living with two autoimmune diseases is hard, but it's also as hard as you make it. My friends are so loyal and supportive, they don't even go out because when they come to see me, they don't want me to risk getting me sick with COVID-19.

It's crazy because a lot of people I know contracted the virus. I have not had it, and I'm not sure if it's because I don't do anything. I still have to try to go to the grocery store. I still have to get out. The great thing is the COVID-19 pandemic hasn't affected my doctor's appointments due to the seriousness of my illnesses. Both my rheumatologist and neurosurgeon listen to how I'm feeling and we go from there. They never have a problem seeing me in the clinic if I don't feel well, and I take extra precautions like not going out unless it's necessary and taking daily vitamins to boost my immune system.

[Having RA] is a very in-between deal because when you're disabled, people feel like you're not supposed to have good days. There are days that I actually do feel good. But there are also days when I don't want to get out of bed.

Courtney Brisco
Courtesy Courtney Brisco

I'm only 30 years old and I have hopes of returning back to work. But I do know that this is my new reality and I'm OK with it. Since I started sharing my journey with rheumatoid arthritis and Chiari malformation on social media, I've gotten so many direct messages from other people asking, "Hey, so how do you feel about this?" and "What's the right way to go?" I don't mind talking about it.

When I give someone advice to other RA warriors, I tell them it's OK not to feel OK. I've had to learn that it's OK to say no to going out. It's OK to not want to be around people. You're not lazy, unmotivated or stuck. After years of living in your survivor mode, you're exhausted. That's the difference. Nobody knows what you're going through, but you.

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