Living With Chronic Illness

Because I want to share what my day-to-day reality actually looks like.

In early 2020, I had a severe case of COVID. I was furloughed at work, thankfully, because I was sick for months. COVID ignited several chronic illnesses that had not previously existed (Maybe Leukemia – nope, Psoriatic Arthritis!)  OR had been mild or manageable (psoriasis, asthma, T2D) and I eventually moved to part-time work because my body just could not do more.

My capacity changed. (Oh, and back then I wasn’t using the word capacity…)

I eventually reached a point in 2022 where I started to slowly work back into a full-time position. (BECAUSE LIFE IS FUCKING EXPENSIVE) Then I got COVID again.

Three+ years later here I am. I live with Long COVID and other chronic conditions. I’ve participated in research studies and receive care through the UB Long Covid clinic.

I’m often dizzy or lightheaded and have had serious bouts of vertigo, I have breathing issues, I’ve nearly passed out while driving, which is one of the main reasons I drive as little as possible. Some days I’m breathless just walking and talking. I stand up, heart races and sometimes need to hold the wall. Other days, migraines hit and I have to hide under the covers.

And then there’s the fatigue  – every single day, constant and impossible to explain if you haven’t experienced it first hand. After a full day of functioning, my body wants to crawl in bed by 7pm.  It doesn’t make sense, but it’s my reality.

I’ve never been particularly physically fit, but this is different. Moving tables and chairs shouldn’t be a big deal, and some days I can do it. Other days it sends me into a flare for the rest of the day, or even the rest of the week. I mask at work because of the air quality and when in public because the medications I take suppress my immune system.

Living with chronic illness and disability means I don’t fit into normal expectations about planning, predictability, or time off at work. I’d guess that 80% of my PTO isn’t rest or vacation – it’s sick time, recovery days, or partial days for doctor appointments. (And it seems the other 20% is family emergencies, doggo care, deaths etc…) ASIDE HOW LUCKY I AM TO HAVE PTO IN THE FIRST PLACE! My time off is rarely planned. Yep, I’m out again. Sorry not sorry. This is my normal. This is how my time off is used. I don’t have days saved for a vacation.

I’m sharing this because visibility matters. I’m blessed to work in a supportive, inclusive environment. Patience, flexibility and understanding make a real difference – especially when limitations aren’t obvious.

I don’t have to explain my body or my limits to anyone, but as ALL THINGS JENNIFER –  I choose to and hope it creates a little more understanding not just for me, but for others living with chronic illness and disabilities.