“There is always something good in every day; we just need to look for it.”

Sophia Grothoff, 22, of Bonn, Germany, was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in February 2020. Her story has been edited for style and clarity.

I had trouble breathing for quite a while before I was diagnosed. No one really took me seriously until I started coughing blood in December 2019. I was in the hospital for a couple days for some tests. No results. No one knew why I was coughing blood or where it could have come from. So, I got sent home. I wasn’t supposed to think about it anymore, but I had this strange feeling inside of me that something was not right.

I am currently doing my education to become a midwife at a university hospital in Bonn, Germany. I thought that it could help to talk to some doctors I know who work with patients who have heart problems. I asked one of them for her opinion and what she thought I should do. She also had a strange feeling about all of this. She talked to a cardiologist from the hospital where I was working. Finally I was taken seriously.

Long story short, it came out that I am suffering from PAH. I was shocked. I always knew that something wasn’t right, but I didn’t expect it to be a rare disease. It took a while to accept the fact that it will never go away. I had busted dreams and moments of uncertainty. A huge difficulty for me right now is the coronavirus situation. Because I am still doing my education, I only have a certain amount of sick days. I’ve reached these days already.

I was told not to go to work [during pandemic stay-at-home measures] because I am a person high of risk. I was glad that I got to stay home because this virus is kind of scaring me. I don’t really know what the virus is going to do to people with PAH. I would rather stay home safely instead of working and risking getting the virus. It might be harder for me to keep up with the others because I am now missing out on a bunch of stuff.

The hardest thing for me since I got diagnosed was that I was told not to get pregnant. I think it’s every girl’s dream to build a family of her own someday. That dream was busted right away. I think it’s even harder for me right now because I am studying to become a midwife. It’s something I think about a lot, and it’s still hard for me to accept.

Other than that, I am trying to eat healthier, stay active and quit stuff like caffeine and alcohol. Being out of breath sucks, but I am just trying to accept it and adjust to everything. I keep telling myself that everything happens for a reason.

My family is really supportive and is helping me deal with all of this. I am trying to stay positive even on rough days. There is always something good in every day; we just need to look for it. Don’t make it worse than it already is. We are going to make it. We will have a wonderful life even under these conditions. Hope and positivity are all we’ve got.

Sophia Grothoff