Why Pulmonary Hypertension Isn’t an Invisible Illness to Me

Pulmonary hypertension might be an invisible illness, but it isn’t invisible to me. I notice pulmonary hypertension first thing when I wake up in the morning. I roll over, often feeling like a fish tangled in wire, and gingerly try to avoiding stepping on my oxygen cord as I try to get out of bed.

I am reminded of how serious my illness is by the time I finish my breakfast. It is at this time that I gobble down pills prescribed to me to help manage my pulmonary hypertension. It is a daily reminder that I am dependent on medication for the rest of my life. Although these pills won’t cure me, they help slow down the process of my body killing itself.

Sometimes I will have a bad-side-effect day from the medications I take. This can range in uncontrollable bowel problems to headaches behind my eyes. I feel lucky that I don’t experience these symptoms every day, but they are difficult to manage on the days they do happen. I’ve had to cancel trips, plans and work all because of side effects ― often retreating to bed or the bathroom.

I feel frustrated by the changes in my body at least once a day. Even after three-and-a-half years, I still forget about the “new limitations” that have been put in place by pulmonary hypertension. The other day, I had to take my dog outside during a storm. I tried to run back to the house, and immediately felt a sense of heartache.
It felt as if there was a plastic bag over my head, as I desperately tried to gasp for air. I had forgotten I can’t even run from the front yard to my front door. I feel this sense of disappointment throughout the day while trying to do various activities, from walking up a hill, to showering, to putting on pants, to going up a flight of stairs.

 

Because pulmonary hypertension isn’t always visible, I get judgmental stares on days when I use an accessible parking pass. I try to avoid using it, but sometimes I have no other choice, if I am having a “bad PH day,” or can’t find a spot close to a door. I know people see me and assume that I must be lazy or feel entitled.

It can be difficult explaining how serious a disease is to someone who can’t see it. I don’t always look like someone who has been told they had five years to live because their diagnosis was so severe. I’ve had family claim I am not sick, mostly because of how I look, and because they never have bothered to see me after my diagnosis, or ask me questions about my life now.

Even though my disease is invisible, I feel how it isolates me from friends and family. Sometimes, I have to leave social events because of smoke, or if someone else is sick. It can be hard to really go anywhere unexpected, or meet new people, because of how dangerous something like the common cold could be for me. I’ve also watched a lot of people in my life become fair-weather friends after my diagnosis.

Every day, I am reminded of what it means to live with pulmonary hypertension, and the physical limitations it has placed on my body. Some days are better than others, but living with a progressive and incurable heart-lung disease is still a heavy burden.

Even if you can’t see it, I know what it feels like to live with pulmonary hypertension. I’ve felt it every single day for the past three-and-a-half years.

This blog originally appeared on Pulmonary Hypertension News.

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Thinkstock photo by PongsakornJun