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. 

woman in a hospital bed with stuffed animals

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.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Pulmonary Hypertension

woman holding journal with dogs on the cover with her dog lying in the background

When I Started a 'Gratitude Journal' After My Difficult Diagnosis

After I was first diagnosed with pulmonary hypertension, I had a very difficult time feeling thankful for anything. Instead I felt cursed, doomed, unlucky. I was 25, followed a daily healthy diet, was active, never smoked a day in my life and there I was, stage 3 to 4 pulmonary hypertension and on oxygen 24/7. [...]

I'm Aware That I'm Rare: Jim White, MD

R. James White, MD, PhD from University Rochester Medical Center talks about his fifteen year career treating pulmonary hypertension, the importance of PH awareness to the medical community and his gratitude to all patients who participate in clinical research studies. Listen along as he tells his story. Transcript: My name is Jim White. I am [...]

I'm Aware That I'm Rare: Danijela Pešić

Danijela Pešić is the founder of PH Serbia. She was diagnosed with pulmonary hypertension as a baby over 38 years ago. Danijela is dedicated to raising PH awareness across Serbia and Europe, on behalf of people living with the disease. She works tirelessly to ensure the availability of approved treatments and encourages research for new [...]
Male doctor discussing reports with patient at desk in medical office

When My Male Doctors Can't Grasp How Illness Affects My Life

On Monday of last week, I received a phone call from my family doctor to let me know that I had to come in to talk about the results of my pelvic ultrasound, which I wrote about earlier. I feared it might be the final nail in the coffin. It is safe to say I have [...]