Around the Globe: Malcolm from New York

This article features 31 year old Malcolm from Brooklyn, New York. He has been sick for 3 years.

Name: Malcolm Brooks
Gender: Male
Age: 31
How old were you when you developed Long Covid? 28
I live in: Brooklyn, New York

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Could you please tell us a little about yourself?

I was born and raised in Brooklyn, New York. I was a very active guy growing up, whether it be working out, playing basketball or hanging out with friends. I ended up taking basketball very seriously and dedicated my life towards the game. This which led me to land a division 1 scholarship. After I graduated, I was fortunate to play all over the world in countries such as the Czech Republic, Slovakia and Cyprus.

When did you catch Covid-19? And what was your initial infection like?

My first infection is the only one I know of, and that was October 2020. Initially, it was not that bad. It felt like a flu and at that time we were told symptoms would only last 2-3 weeks. I tried to push through and continued working out (albeit at a slower pace). I always believed exercise was the cure to everything.

Have you received a formal diagnosis for Long Covid? If so, what did that involve?

Yes, but it took me about a year for formal diagnosis. I always suspected it was Covid-19 causing my weird lingering symptoms, but my cardiologist was the first to officially tell me “you have Long Covid”. He recommended I go to Mt Sinai LC Center which is where I was formally diagnosed.

Can you describe your experience with Long Covid? How has it affected you physically and emotionally?  

Wow, I could give an entire speech on what this has done to me. Long Covid has drained the life out of me physically and mentally. I’ve become so physically debilitated that I’m housebound most of the time. I consider it a good day when I can muster the strength to go for a short walk.

I’ve become so physically debilitated that I’m housebound most of the time. A good day is when I can go for a short walk.

Mentally, it’s by far the most challenging thing I’ve been through. Any “adversity” I went through prior to this illness seem like nothing now. It’s been the more extreme, lonely and isolating experience. Few people understand the torture of a chronic illness.

How has Long Covid impact your daily life, and what adjustments have you had to make to accommodate your symptoms?

It has drastically changed my life, nothing is the same. My day to day life is now entirely based on coping with the symptoms I deal with. The majority of my life I’ve pushed through illnesses, but this is a different beast. I have to be extremely delicate with my body. Being kind and intuitive with myself has been the most beneficial adjustment I have made.

The majority of my life I’ve pushed through illnesses, but this is a different beast.

In your opinion, what are the biggest challenges that Long Covid patients face in terms of medical care and support?   

The biggest challenge is there is no support. The only thing I have been offered in this three year battle is anti-anxiety meds and breathing exercises.

Another challenge is the financial burden because call the doctors visits and lab tests are expensive.  Getting the disability benefit in America is extremely difficult. It’s a total misnomer that anyone would make this illness up because most of us can’t even access the disability benefit, given Long Covid is still not formally recognised as a “disability”.

Are there “Covid clinics” in your country and have you been to one? If so, what was that like?

Yes I have been to the Mt.Sinai clinic. Initially, I was disappointed because there was little to no treatment options presented to me except breathing exercises, and physiotherapy. However, more recently there has been a lot of new information regarding Long Covid and I have been given good advice moving forward.

What’s the most helpful thing someone could do to help you?

Honestly, the most helpful genuine thing someone could do is just listen, and educate yourself about Long Covid.  If you really care about your significant other or a good friend, take some time out of your day to read up on things, instead of just wondering why that person you know is “acting” different now or is always tired and sick.

What do you wish people would say or not say to you?

My expectations of others have dropped dramatically since I got sick and I’m at the point where I do not care what people say or don’t say. Have I been disappointed at sometimes at people’s reaction or attitude toward this illness? Absolutely, but I do not let it hang over my head anymore. 

Have you found any treatments or strategies to manage your symptoms better?

I’ve taken every supplement you can think of, tried all kinds of holistic medicine and nothing has moved the needle drastically.  I even spent a few thousand on HBOT (Hyperbaric oxygen therapy) and it temporarily helped with brain fog and headaches but the relief did not last. Rest is the only thing that helps but even that is not consistent. Sometimes I’ll rest all day but still wake up the next day even terribly sick. With Long Covid is totally unpredictable.