I wish that I could sit down face to face and talk to parents after their children have been diagnosed with POTS. Being diagnosed with POTS is overwhelming for both the patient and their family members and friends, and because there aren’t many people who are diagnosed, it can feel lonely. As a POTS patient, I feel like I could maybe answer questions that parents don’t want to ask their own children, or impart some advice on them from my own experience. While I don’t have a place where I can actually do this, I do recognize that I have this little place on the internet… so here goes!
Dear Parent of Someone Diagnosed with POTS,
First of all- welcome to my blog. I am a mental health counselor, pilates barre instructor, runner, biker, and I love to travel. I also have POTS, and was diagnosed with POTS 10 years ago (but have been “sick” for 11 years now). Where I’m at today is leaps and bounds ahead of where I was those first years I was diagnosed, but I still experience pain and frustration daily because of my diagnosis. You’re starting on a long journey, but there are plenty of people to support you. Know that I’m sorry. I’m sorry for your child, your family, and you. This journey is tough. There are moments of hope, moments of despair, and moments of confusion. There are moments of anger and frustration, and moments of joy.
I wish someone had sat down with my parents and really explained to them what was going on. Generally speaking, I felt really misunderstood by my family in terms of my diagnosis. Part of that was because I was diagnosed pretty early on in the POTS diagnosing, and there’s a lot more known today than there was back then (for instance, I was told that I’d be back to normal in a few years- this led to minimization of my experiences and a fall sense of hope!). Part of it was on me, as I shut down at the beginning and didn’t really talk about it at all. Take the time to read about POTS and about others’ experiences. Each person experiences POTS in different ways (we all don’t have the same cookie cutter experience!), so just because one person doesn’t experience something doesn’t mean your child is making it up, but it’ll give you a good idea of what they’re going through. Please know that your child isn’t “being dramatic” or “making it up” or “being weak”. Those phrases are so hurtful and damaging. Learn, read, and connect with other people with POTS so that you can learn, understand, and empathize.
Don’t create more guilt for your child. As a family, I’m sure you’re each experiencing some grief and loss in your own ways. Worry, fear, and misunderstanding can abound, and it’s easy to get angry and express frustrations towards your child. Please know that, more than likely, your child already feels incredibly guilty for their diagnosis, and the resulting changes and stress this creates in the family. Remember that we didn’t ask for this, and we suffer more than anyone else in this. Yes, it deeply impacts your life, but you don’t live moment to moment in pain, feeling dizzy, or unable to do the things you used to it. Living moment to moment, without a break from the diagnosis, is exhausting and overwhelming. I felt guilty for years, and comments those close to me made only served to hurt.
Get support for yourself outside of the family unit! Reach out to other parents of children with chronic illness so that you can get support for yourself! Seek out a counselor if needed- it’s a place to verbalize the things that you feel too horrible verbalizing to anyone else. Embrace the process of grief for yourself and your child- don’t try to deny it.
Don’t give up hope for your child. There are so many moments where life feels hopeless due to the diagnosis. “I’ll never feel better, I’ll never be able to have the life I imagined, I’ll never be able to do ____ again”. Having family and friends around me to hold onto hope when I’m struggling has been so incredibly helpful. Hold onto hope, and believe that progress will be made, even if it takes years and is slow.
Know that there are beautiful things that come out of suffering, and chronic illness is no different. There are beautiful lessons I’ve learned out of this deep pain in my life, and in some ways it’s made me be a much better and stronger person than I was before. There are lessons I’ve learned from being diagnosed with POTS that I wouldn’t have learned the same way without my diagnosis. I hate my diagnosis, and I’m thankful for many of the lessons as a result.
Life isn’t over, even though there are plenty of moments where it sort of feels that way. There’s beauty in pain and suffering. Even with my chronic illness, the hours and days I’ve lost being sick, the times I’ve sat in the hospital, and the piles of bills that have been paid every month for 11 years, life is still beautiful. Let me say that again- Life. Is. Beautiful.
Sincerely, A POTS patient learning to live with grace in the face of chronic illness.