When I Feel Guilty for Not Working Because of My Invisible Illness

I haven’t worked since December 2013. That’s when I was diagnosed with pulmonary hypertension, a rare, invisible, chronic and incurable disease.

At the time, I intended to return to work, even though I was on oxygen 24/7 and in right heart failure. I had no idea what the disease entailed at the time, and I just assumed I would be good as new once the medication kicked in.  

But my husband always knew better. It’s not like he didn’t have confidence in me; he just knew that this disease was a bad one, and it would do things to my body that would make it impossible to go back to my teaching position. 

I eventually got off oxygen, but the oral medication never brought me to a level of stability we were hoping for.  That’s when I had no choice but to start IV therapy — 24/7. And while the IV medication has helped with my breathing, it brings a whole slew of side effects, which, at times, can incapacitate my body: sore legs, sore feet, digestive issues, fatigue, headaches. The side effects make it hard to maintain a “normal” life.

I was teaching the sixth grade when I was diagnosed, and I had been a teacher for 12 years. I loved my job. I felt purposeful and valuable.

Now, not so much. 

In fact, I sometimes feel useless to society. I know I’m educating others about my disease via social media, but it’s not the same as having a 9-5 job. 

Some days, I feel quite envious of my teacher friends or any other employed person for that matter. By not working, I feel like I lack a purpose in life. How do I explain it? It seems that we are born, we go to school and then work. Isn’t that how life works?   

Sometimes I feel embarrassed to say I’m on sick leave or on long-term disability. Aside from the lack of purpose I feel, I also feel guilty for not working, guilty for staying home when I don’t “look sick,” guilty for being seen grocery shopping or going on a vacation and guilty for posting a picture on social media of me looking happy.

That’s the whole problem with an invisible illness. People don’t see the IV medication pump I need to carry — 24/7 — with life-saving medication dispensing into a catheter in my chest. They don’t see the terrible side effects of this medication and the limitations imposed. They don’t see the awful side of the disease that I don’t post on social media.

It’s been three years since my life-changing diagnosis, and I wonder if I will ever get comfortable saying, “No, I don’t work,” and not feeling the need to justify the reason why.

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