My Disease May Be Invisible, but It's Never Invisible to Me

Sometimes my disease makes me sick. And by sick, I mean it disgusts me and consumes me so much that I literally feel sick about the thought it.  

When you’re diagnosed with something like pulmonary hypertension (PH), it becomes your whole life — morning, noon and night — whether you want it to or not.  You can, momentarily, forget about it, but otherwise it’s always there: the medication, the pain, the limitations, the tube attached to my chest, the depression, the anxiety, the side effects, the red, splotchy rash, the doctor’s appointments, the advocating and the educating.

At times, I get tired of hearing about pulmonary hypertension and get tired of talking about it. I get tired of being asked how I’m doing or feeling, how the medications are working or if the side effects have gotten any better. Every single thing I do — every step and every action — revolves around this disease, whether it’s something as simple as getting up from the couch to walk to the kitchen or planning a vacation. The disease is always there. Even though pictures may show the invisibility of the disease, it’s there. Always.

It would be nice to have a whole week — a whole day even — where I don’t have to think about this disease. I just want my thoughts to be about something else — anything other than this dreaded disease. 

It would be nice to forget about it. It’s been three years of this, and for some, it has been way longer. I can imagine they feel even more disgusted than me at times.   

It has been days and days of mixing my own IV medicine and taking 8 to 10 pills a day. And it’s been countless mornings where I can barely walk when I wake up because the side effects.  

It’s been morning after morning of looking at my splotchy face because my medicine expands my blood vessels and that causes my face, neck and body to like a red, blotchy mess.  

It’s been more days of fatigue and lack of energy than I can even count. Even on a good day, this disease disgusts me because it’s always there. It might not necessarily be on the forefront of my mind, but it’s there — gnawing away. 

My disease may be invisible, but it’s never invisible to me. Ever. 

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