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Eileen Tattoo

When I was diagnosed with rheumatoid arthritis my life, I was forced to confront a lot of uncomfortable emotions. Waves of grief, sadness, anger, loss, denial, bargaining — all of it was a natural process I had to go through in response to a drastic and unwanted change in my life.

Anyone else going through a drastic and unwanted change these days?

I realized that I have been feeling similar emotions lately as the COVID-19 pandemic takes its toll on me — and the rest of the world. I know I am not alone in my grief this time. We are all feeling some of the same discomforts that chronic illness patients like me are used to.

It is oddly nice to not feel totally alone in my grief this time around.

Getting Over Grief

The grief process was not easy to go through then and it is not easy to go through now. It wasn’t just a few days or weeks; instead it played out over months and years.

In fact, I still cope with the ebb and flow of my RA-related grief because the losses with chronic illness never really stop. They just evolve. After RA, I wanted happiness. I wanted to go back to normal.

Those things felt out of my control then, just as COVID-19 is making a lot of things feel out of control now.

But while in some ways having RA makes me terrified — mainly because it makes me immunocompromised — it has also been making me feel grateful for the coping skills it has given me.

I’ve Been Practicing Social Distancing Long Before It Was Cool

I already had a stockpile of hand sanitizer and toilet paper before they were a hot commodity. Because my illness is unpredictable, I kinda always keep weeks of supplies on hand just in case I have an arthritis flare. Leaving the house when your fatigue and/or pain is heightened is near impossible.

That same pain and fatigue that makes me stockpile necessities also make me cringe sometimes when someone touches me with a handshake or hug. It’s not just their germs that bother me but also the invisible pain and joint issues lurking inside me. Fatigue can make socializing impossible.

I’ve had bouts of illness that lasted months. I’ve learned that chronic illness forces you to experience depths of loneliness that terrorize the mind and soul.

I’m sure many people are feeling similar loneliness while stuck in isolation, even without a chronic illness. It can get uncomfortable fast when you’re stuck inside your own head for too long.

I am used to days and nights that blur together, stuck in my home, losing track of time and space — either due to unpredictable symptoms, lack of money from no longer being able to work, or lack of people to enjoy activities with.

I tend to hibernate during flu season, when I am at a higher risk of catching infections.

Frankly, many parts of my life didn’t change much after widespread social distancing was put into place.

But at least going through five years of chronic illness has given me some indoor hobbies (I like to paint) and the ability to get by in poverty. Those skills are coming in handy today. I’m definitely grateful for the medical lingo I understand already from being chronically ill.

My RA diagnosis showed me the true colors of a lot of people in my life. Now the pandemic is revealing more. I had to remove a lot of toxic people from my life when RA hit. Now I am removing those who could potentially infect me because they are covidiots.

Proving Myself All Over Again

One thing I would like to complain about for a hot second: My frustrations of living with an invisible disability are heightened again. I’ve needed to “prove” I am considered high-risk to people who normally wouldn’t need to know such personal information about me. It’s hard to prove you are sick when you don’t look it.

Am I supposed to carry a doctor’s note around with me now? Many grocery stores are implementing a special early shopping hour for the elderly and disabled, but when you live with an invisible disability and are 34 years old, how do you prove it?

It’s like being questioned why you need the disabled parking placard multiplied by a hundred, because the stakes are that much higher right now.

Exhibit A: I went to the store at 7 AM to get my son some essential supplies. Angry people were lingering outside, frustrated that they weren’t allowed in because the hour was dedicated the most vulnerable shoppers. Once I got inside, a swarm of security and employees surrounded me. They clearly wanted to know what I was doing there.

I explained to them that they will get people who look healthy and young, but have some condition that they’ve probably never really heard and definitely can’t “see.”

I shopped that day, but the experience made me feel extremely uncomfortable and I’ve mostly avoided the store since.

My neighbors have directed judgmental comments toward me for having someone stop by. Little do they know that person is dropping off groceries or helping me with an essential service that I can’t do because of my invisible disability.

I know we are all experiencing moments of high stress and tensions are running high. But can we please try to sustain a basic level of kindness and empathy? That goes a lot further than lashing out in anger at strangers because you feel out of control.

What I Hope Comes Out of This

I don’t want to lose anyone to COVID-19. I don’t want people to lose their jobs, homes, and their medical care. I am scared of what the future holds for all of us after this.

But I do hope some good comes out of this nightmare.

I hope for better understanding for those living with autoimmune and serious health conditions. I hope for better care and support for the disabled. I hope for a better understanding of mental health issues. I hope people have a better understanding of invisible illnesses and that it’s not just the elderly who can get serious illnesses like arthritis. With RA and lupus so much in the news — because they are commonly treated with hydroxychloroquine, a drug that is being studied as a COVD-19 treatment — I hope people actually look up what those diseases are.

I hope I stop hearing that “you are young, you are fine” because as we can see now disease doesn’t care about age.

I hope people start to take public health and preventive health more seriously. I hope this inspires younger generations to become health care heroes.

I hope we all stay safe.

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