Sometimes I feel like having a health condition is a full-time job. I also have a “real” full-time job.
Before I was diagnosed with pulmonary hypertension (PH), I never considered how much admin would be involved in having a serious health condition. I think people are mostly unaware of how many plates people with chronic illnesses are spinning at any given time.
For one thing, I am on four different medications that I take at three different times of day. I manage this by setting alarms, but I can’t tell you how many times one of my alarms has gone off during a work call, startling my colleagues. I also have to keep track of when I’m going to run out of each medication and coordinate deliveries (spoiler: they never run out at the same time).
Appointments are also time-consuming, but beyond that there are phone calls. My consultants and pulmonary hypertension nurses often ring me in the middle of the day while I’m at work. Pre-COVID-19, if I was in the office I would have to excuse myself to take calls and I always worried people thought I was slacking. But anyone who’s had serious health problems knows that when you see “No Caller ID,” you answer it!
Just this week my consultant rang me and the phone call went on longer than I expected. I had to frantically type a message to my boss letting them know I’d be offline for a bit, while trying not to miss anything my consultant said.
With everything I’m juggling, I’m not always as prepared for my consultations as I would like to be. This week I had to scramble to weigh myself on my mum’s digital scales and quickly count out my medication while on the phone.
Myriad factors can make all this even more difficult. I often have to coordinate between my general practitioner and my specialist team — not to mention I have hospital mail coming to both my address and my parents’ address. I miss the days when post was exciting. Now it’s all from the NHS!
When I’m talking to my specialist team I always wish I was one of those people who kept folders and files with all their relevant health info and every ECG they’ve ever had. But then I remember that most of my energy goes into trying to live a normal life. It can be really challenging when you are constantly expected to keep up with everyone else.
I am really grateful that I am still well enough to work full-time but sometimes I feel like I’m living in two worlds that have very little awareness of one another. In the “pulmonary hypertension world” my team sometimes forgets all the “normal life” stuff I’m dealing with and I’m always expected to be able to drop everything at a moment’s notice. In the “work world” I feel the pressure to keep hidden all the little, non-obvious ways my health condition impacts my work.
I have come to realize that it is ridiculous for me to beat myself up when things fall through the cracks, or for not being where I want to be in my career, when I have an awful lot more on my plate to wrestle with than most 25-year-olds. It is difficult but I try not to compare myself to my able-bodied, healthy friends and colleagues. I am running the marathon with an extra heavy backpack on! I am convinced that anyone battling chronic illness who manages to maintain some semblance of a normal life is a superhero/elite gold medalist.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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