How the Pandemic Made It Easier to Deny the Reality of My PH

The ongoing pandemic means my normal schedule of hospital appointments has been disrupted for more than a year. 

I have previously written that this makes me increasingly anxious about my physical health. Although I’ve had telephone check-ins with my doctors, it is strange that I haven’t had any of my regular medical tests for such a long period of time. 

I worry that any physical deterioration is more likely to go undetected. But not having appointments or time in the hospital has also been challenging, as it has allowed me to fall into a bit of denial.

In normal times, I would visit my pulmonary hypertension center every three months. This gives my doctors the best chance of staying on top of my condition. These appointments also help me mentally process my illness. 

As nice as it is to be away from the hospital for a long time, it becomes harder to accept the reality of my illness. I start feeling like a normal 26-year-old. 

While this is a blessing on one level, it also makes me anxious about the inevitable crash back to reality when I return to the hospital and finally undergo all the tests that have been delayed. 

Although hospital appointments can cause acute anxiety, they help me feel well-informed about my disease progression, which means I don’t have as “far to fall” if I receive bad news. Right now, feeling as distant from the PH world as I do, I worry that receiving a small piece of bad news would feel like being diagnosed all over again. 

Over the last few years, I have realized the importance of striking a balance between living a normal life and living in denial of my illness. Finding ways to integrate the reality of PH into my life has helped me have a healthy, informed, and hopeful attitude.

For the first year after my diagnosis, I avoided connecting with other people living with PH — it made things feel too real. But once I decided to get involved with the PH community online, I was shocked by how much it helped me begin to accept my illness.

Similarly, early on in my PH journey, I felt that if I didn’t speak about my illness with anybody, then it didn’t really exist. But learning to have an open dialogue with my loved ones about the day-to-day struggles I face because of my illness helped me decompartmentalize and merge the two versions of myself I’d been trying to keep separate — “sick Ellie” and just “Ellie.”

The strange circumstances resulting from the pandemic may have set me back slightly as far as coming to terms with my condition, but I recognize that processing my diagnosis won’t always be linear. And that’s OK.

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Note: Pulmonary Hypertension 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 Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.