Guide to POTS

Hoping this makes a confusing chronic illness diagnosis easier


Disclaimer: I am not a medical professional. I can only speak to my own experience and hope that it gives you some insight into what POTS is and how it can affect you or the people around you.

If you are diagnosed young, you are going to be very dependent on your parents, especially when you are so sick and living in their home. If you are older and get diagnosed, hopefully you have supportive parents.

Their reactions to your diagnosis might be different.

Your parents might have vastly different reactions to your diagnosis. One might be fully supportive and gung-ho for every treatment out there, while the other might be hesitant to try new medications and treatments, or they could be in denial of your diagnosis. They will come around eventually, hopefully. You need to work out what is best for you and your family when it comes to your diagnosis. I would recommend therapy for you and possibly family therapy if you think it would help.

They might struggle to understand how much you hurt, and you will struggle to see how much they hurt.

You will get caught up in your pain, and they will see you hurt, but you will be frustrated if they push you or suggest other methods of dealing. It will seem like they don’t understand and that they don’t see how much pain you’re in. They might not understand the full scope of what you’re going through, but they will see how much pain you’re in. You will struggle to see how much you are hurting them. I struggle with this all the time. Maybe when you become a parent, it becomes clear, but I’m always amazed when my mom cries in relief from me getting a good diagnosis.

You’re going to frustrate each other.

They’re going to have opinions and approaches they want you to try, and you’re going to have opinions and approaches they don’t want you to try. There’s no right or wrong way to handle your illness, and they’re only trying their best as well. Be kind to each other and try to see it from their perspective.

No matter what, they will worry.

They’re your parents, the same way they worried about you scraping your knee as a kid. Your parents will worry about every little thing, even if you’re not worried. So pick and choose what you tell them as you get older because they will bring up the fact that you bruised easily six months ago at Christmas dinner and be worried that you’re anemic.

They’re your parents.

They will be your biggest supporters and the ones who give you the hardest time. They will drive you to every appointment, listen to all of your panicked calls, and help you through the worst of times. They will also give you a hard time every chance they can, especially when they think you’re doing the wrong thing. They’re your parents. What can you expect?

Further Reading

Parental Reactions To Having A Chronically Ill Child, Accessed 28 June 2023.

“Parent Toolkit: Parenting a Child With a Chronic Illness.” Children’s Hospital Colorado, Accessed 28 June 2023.

“When your child is diagnosed with chronic illness.” American Psychological Association, 1 August 2013, Accessed 28 June 2023.

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