PCD setbacks : Hi I am a college age... - PCD Family Suppor...

PCD Family Support Group (UK)

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PCD setbacks

Baynajarian profile image

Hi I am a college age girl with PCD and Situs Inversus. I have never talked to anyone that has the same disease. There is a lot I would like to talk about with others about the condition, but recently I have been wondering about sports and athletic performance. Both sides of my family are d1 basketball and tennis players, so athleticism runs in my genes. I grew up playing and exceeding in sports, but when I got to the highschool level, it became too much to handle because of all of the extra running and in order to qualify, I had to be able to run 2 miles. This was too much with my PCD, so I reluctantly had to quit. Now in college, I tried out for a tennis team. I knew I could take it as I have the skills, but I got too tired during tryouts while playing multiple singles matches. This is just one of the many setbacks PCD has brought to my life including academics (missing up to 80 days of school some years), social (not being able to always go out with friends), and generally being comfortable in my own skin due to the setbacks my disease has brought me.

Can anyone relate to any of this stuff? It would be very helpful so hear someone who has similar issues.

5 Replies

Hi there,

I was very active as a child into my early teens. I used to figure skate, and was also a back catcher in softball. I also found it challenging to keep up with my competitors, and teammates. I did eventually have to stop everything when I was about 16-17. I am now 32, and I do still try to stay active. I often work out at home so that I can take breaks if needed. I have participated on some softball teams in the past few years, but they aren't as competitive as before.

I understand how you feel, I never used to talk about my disease with anyone outside of my doctors and immediate family. Over time I have opened up about it with close friends and colleagues and I've found most people are there to listen and support you.

Baynajarian profile image
Baynajarian in reply to corki

Thanks for the reply!! Everything you said, I can relate to. I eventually had to stop playing basketball, tennis, and field hockey when I got to the the later high school years because it was too much running. I work out at home as well so that I can go at my own pace and take breaks. I am in college, so it is a little more difficult to do this as you would imagine. I tried to do a club tennis team here, but could not keep up due to my health, so frustrated with all this, I came to this website.

Yes, it really is difficult to talk about the disease because you don't want people to look at you differently, but I have found that my college friends here have been more than supportive. However, it still is my responsibility to take care of myself, and so sometimes I feel alone as no one here really understands what it is like to deal with PCD on a day to day basis.

corki profile image
corki in reply to Baynajarian

I can definitely understand the challenges with trying to stay active, while being in school, and living with PCD. I have completed 2 degrees, which took a lot of self-motivation. There were many days where I just wanted to stay in bed and rest, meanwhile I had an exam or papers due. I did have to put certain activities on hold while I was in school, as I found it very challenging to keep up with everything.

I do know what you mean about feeling alone in this disease. People do try to understand when you explain your symptoms, but no one truly understands how you feel until you live it. Plus I always find people comment on how well I look on the outside, meanwhile I feel awful on the inside. That drives me a little nuts! Anyways, I wish you the best of luck in school, and please know you're definitely not alone in the way you're feeling.

Baynajarian profile image
Baynajarian in reply to corki

Wow, what were your degrees in? What college(s) did you graduate from?

Yes, it definitely can be difficult when there are days you cannot be as capable as you need to be. I agree with putting things on hold as sometimes you would like to be able to keep up with others/your friends, but it sometimes is just not possible.

It's great to know that I am not alone with what I am feeling because yes, we do look completely normal on the outside so I find sometimes people question the severity of my PCD.

I’ve missed so many days of school I’ve lost count. I was just tested for a math disorder because they didn’t realize how behind I was in math due to all my absences.

I have a 504 plan as well but my school is not very good at following it. It is a requirement to take 3 years of gym and they cant understand that I can’t keep up with the other kids. I received a gym credit over the summer and my school won’t accept it!

As of right now I need my school to understand my PCD and get that its not easy. And doing sports was something I did until I couldn’t anymore. I had to quit the tennis team. One of my close friends even told me “you don’t look sick. Your probably just being dramatic and faking it.” People just don’t understand. How do you deal with all of this in college?

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