COVID-19 has been around for about a minute now. The first time I heard of it was, I believe, in late 2019 on the news. It was spreading throughout China and many people were getting sick and dying. I have to be honest, I didn’t think much of it just because it was in China. It was a viral infection in another country far away from me.

What surprised me the most was how fast it began to spread worldwide. COVID began to worry me but it wasn’t until it hit my city that it began to terrify me, especially as a Pompe disease patient.

A viral infection that was killing thousands of people by destroying the immune system and making it hard to breathe. All I could think about was if I catch this virus it will take my life. People were in hospitals on ventilators fighting for their lives because of COVID and since I’m already weak and on a ventilator, there would be no chance for someone like me.

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It scared me every day. My plans for 2020 were indefinitely cut off. I think the worst part about COVID, other than people dying, is that it changed my life and the lives of so many people with rare diseases or any kind of illness. It’s a scary feeling. Especially the way the countries all over the world were mandating social distancing and having to stay away from family and friends, and the overpacking of hospitals. 

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When you’re a patient with a rare disease, you have special needs in your everyday life. For many of us, that means relying on caregivers, having to interact closely with someone, when at the same time being ordered by your country to stay at least 6 feet away from everyone even when wearing a mask. 

The crazy thing about social distancing is that all you have to do is come in contact with someone who has not been social distancing and that one person could have COVID without showing symptoms. So it’s one of those things you can be careful and do everything to avoid the virus and still catch it because it’s that contagious, at least that’s how I look at it.

I also believe that COVID will be around forever, just like the flu and common cold. What we’re doing right now is learning how to live with this virus and for me, it’s life-changing. I was already big on keeping things clean and trying to stay away from germs, but now I have to be careful with who I’m around. I’ve always kept my distance from people when I see them coughing or blowing their noses but now it’s more serious. We’re going into the new year with COVID numbers down, places opening back up, mask mandates being taken down, and more than half the country being vaccinated, and less stress over COVID compared to when it first emerged, but it’s still very much here.

I just heard that someone I’m close to has COVID and now her family has it. So once again, I have to worry and fear that I don’t catch this virus. It’s a never-ending fear and not just for me but the disability community. We’re already at risk with our weakened immune systems.

People with rare diseases are affected more just by being at a higher risk, especially for respiratory compromised individuals. Even though COVID could take out a completely healthy person, a healthy person has a higher chance of fighting the virus. People with rare diseases have less chance of fighting Covid and beating it. 

I know a few people like myself who are on vents and are terrified of this virus because the result of having COVID is the deterioration of the respiratory system. That’s the part that makes it more terrifying for me. If I could give any advice to those with rare diseases, I would say to keep following the rules by washing your hands, wearing a mask, getting vaccinated, if recommended by your doctor, and keeping a distance from people. But most of all, don’t stress over this virus because worrying will also get you sick. Don’t live every day in fear, it’s exhausting. Continue with your life, just be cautious and careful. That’s all any of us can do.