How an Immunocompromised Rheumatoid Arthritis Patient Wants Society to Move Forward from COVID-19

How an Immunocompromised Rheumatoid Arthritis Patient Wants Society to Move Forward from COVID-19

Traveling. Seeing a movie in a theater. Going to a concert. Hosting a party. Riding on public transportation. Taking my son to an indoor play center, a pool for swim lessons, or watching him perform in the yearly Christmas concert at school. These are just some aspects of my life that were disrupted in some way or another when the COVID-19 pandemic hit Canada and lockdowns were mandated. These were regular routine parts of my life I didn’t realize I took for granted until they came to a completely unexpected halt.

Now, over the next few months, I am anxiously awaiting this nightmare to end. The pandemic continues to wane in my province of British Columbia, and I hope that things will be safely back to somewhat normal.

But I find myself torn between feelings of excitement and fear. Because even though the pandemic feels like it may be ending where I live, my status as an immunocompromised person — which I “earned” after being diagnosed with rheumatoid arthritis (RA) in 2015 — isn’t.

As someone with a compromised immune system, I’ve always had to be extra cautious about my health. I’d diligently wash my hands and utilize hand sanitizer in public spaces. I started picking up my son outside of his school because going into the building increased my risk of contracting an illness.

When the pandemic struck, precautions like these became the norm for everyone. Despite the looming threat of COVID and having a condition that could increase my risk for complications, I felt somewhat safer knowing that others were doing their part to stop the spread. It was a consideration that immunocompromised people rarely see. And, because of this global effort, I saw an improvement in my overall health.

I have not been sick with a cold or flu since January 2020 — a year and a half as I write this. Normally I get sick with some bug or another every few months, no matter my safety efforts. And when someone with a compromised immune system contracts a cold or flu, recovering isn’t always as simple as resting and having some chicken noodle soup. If you’re on immunosuppressant drugs, which I am, your doctor may recommend that you temporarily stop taking them in order to help your body better fight off the infection. Stopping your medications could cause your rheumatic disease to flare — as can having an infection in and of itself — which is a stressor. Additionally, it can take longer to recover from these infections because your body is fatigued from working overtime. Not having to deal with this additional health burden in 2020 was a relief.

But things are changing. We have a COVID-19 vaccine, and many places around the world are starting to reopen amid falling cases. But the risk of a serious infection — be it from COVID, a cold, the flu, or some other virus — still looms over me and others who are immunocompromised.

I do think it’s possible to continue being safe as the world reopens. If everyone shows the same compassion that we had during the pandemic (and yes, take a few extra precautions), there’s no reason we can’t make the world safer not only for the immunocompromised community, but everyone.

This is how I want society to move forward to keep our patient community — and everyone else — safe.

Workers need sick days — with pay — and shouldn’t feel guilty about using them. If you work around other people when you’re sick, you can make them sick too. And pushing yourself when you’re under the weather can delay your own healing and recovery. Having more flexible and remote work options (see below) can help with this.

Before the pandemic, I didn’t really understand why I would occasionally see people walking around with masks. And I admit I felt weird wearing a mask when they first became mandated during COVID-19.

But now I firmly believe that masks should not become a thing of the past. No, I don’t think we should have to wear them all the time, but if you are in an area with vulnerable people (doctor’s offices, waiting rooms, or public transit) you should wear one because it’s selfless and can help keep others safe.

I can say a lot about the benefits social distancing has had on my chronic illness. As busy stores or trains became quieter, I stopped having strangers bump into me. That might not be a big deal to some, but when you live with chronic pain, those bumps can be painful and knock you off your balance. Moving forward, I hope people are more mindful of others’ personal space.

The same goes for hugs and handshakes. Not everyone finds comfort in these go-to greetings. Touch can be painful or anxiety-inducing if you have a condition like rheumatoid arthritis. So don’t feel obligated to shake a hand or give a hug if you’re immunocompromised or in chronic pain. Likewise, don’t be insulted if someone declines your gesture. It’s nothing personal; it’s just protection. And there’s nothing wrong with an elbow bump or a smile instead.

Many experts have said that poor air quality in a cramped spaces is a major culprit in the spread of COVID-19 — something many of us have not thought much about prior to the pandemic. Now we know more about the importance of ventilation and good air quality inside buildings to reduce the spread of respiratory illnesses.

The pandemic has showed us that many jobs can be done remotely. Remote work and flexible hours can benefit people for many reasons, but one group that’s not focused on enough is those with disabilities and chronic health problems. Some people have to stop working altogether because they can’t find a job that accommodates their condition. Giving the option to work remotely may help many people remain in the workforce.

I’ve written before about why I love (and dislike in certain circumstances) telehealth. Going forward, I’m convinced that a hybrid version of telehealth and in-person care needs to become available to everyone. With virtual health care, I can spend less time being a patient and more time living for myself. Eliminating the need to drive or commute long distances to doctor appointments, take time off work, deal with fatigue and brain fog from waiting around to see the doctor — this can be life-changing when you have a chronic illness and need to see the doctor often.

In addition, virtual events, or virtual access to live events, need to remain available too. They allow us to participate with less impact on our health. Why would we stop making the world more accessible to people?

When you’re immunocompromised, getting vaccinated — not just for COVID-19, but other vaccines as well — can be a little scary. You don’t know how you’ll react to the vaccine, how it could affect your current condition or treatment, or whether you’ll get adequate protection. I often feel the same way when starting a new medication for my RA. I have gone through more than 20 medications in the last six years, some with very uncomfortable side effects and more needles than I care to remember. I’ve learned through this process to assess the pros and cons, speak to a trusted health care provider, and make an educated decision from there.

But whether it’s the COVID-19 vaccine, the flu vaccine, the pneumonia vaccine, or another vaccine-preventable condition, getting vaccinated protects your health and may help protect others around you too.

I feel like I shouldn’t have to explain why this is necessary to anyone older than my 8-year-old son, but unfortunately, I must. It’s a step I see too many people skip when using a public restroom, but it’s one of the simplest ways to prevent the spread of infections.

Please, wash your hands and use hand sanitizer if needed. And a note to outdoor event hosts: provide plenty of hand washing or sanitation stations that are easily accessible.

Living with a chronic illness, I have to spend a lot of time at home when I would rather be out there enjoying the outside world too. It’s unsettling to hear people refer to my not-by-choice lifestyle as “a waste.”

“They are going to die anyway.” “They’re old.” “People get sick and die all the time.” These are just some of the awful excuses people have used for not wearing masks, not social distancing, and not getting vaccinated. None of them are remotely acceptable. And sorry to burst your lack-of-compassion bubble, but let’s remember that this pandemic has taught us that anyone can get sick and will “die anyway.” I’m sure you’d want some compassion and help from others to keep you safe if you were living with a chronic illness or were vulnerable because of your age or other risk factors.

During the pandemic, my provincial disability pay increased and paused clawbacks (this is money taken off our benefits when we earn over a certain amount through work). This change made it easier for me to focus on my health. After all, living with a chronic illness comes with a lot of expenses and having that extra financial assistance can help reduce the stress.

Support isn’t limited to the financial kind. Since being diagnosed with rheumatoid arthritis, I started worked as a patient advocate to raise awareness for those living with chronic illnesses. The pandemic has only further highlighted the critical need for this kind of work. Time after time I have had to educate people about RA and why it puts me at higher risk for things like COVID-19. Is it tiring? Yes. But it’s also rewarding when that information clicks and you can see people becoming more empathetic to myself and others living with chronic illness.

Let’s make sure this horrible experience shifts all of us to focus more on the importance of health (physical and mental) and understand that it is something to never be taken for granted.

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.

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