Recently, a young friend was diagnosed with POTS, and thinking about what she and her parents are coping with brought back many memories of the years when my daughter was struggling with POTS. Memories that I had pushed aside of how hard it was for her to try to just get out of bed, how frustrating for me as a mom to not be able to “make it all better,” how much she missed out on because of her illness, years of searching on the internet for information, doctors, treatments….relief to have a diagnosis but sadness that there is no cure, except perhaps time. The medications do help, and time passes.
My daughter will be 22 in May, twice her age when she got mono and as I say “never really recovered.” Yes, over the years she has gradually “outgrown” it. She is so much better today than those most difficult years. Although, it is still with her. The medications are still needed to help her maintain her schedule. She still needs to take care of herself and guard her health. A year ago, she asked when it is that a person is supposed to outgrow POTS. The research says that most patients outgrow POTS by early adulthood. She asked, “What if I’m one who is not like most and I never outgrow it?” “When is early adulthood?” she asked. “Twenty-three,” I said.
She finished 3 years of undergraduate studies on schedule, by avoiding 8:00 a.m. classes “like the plague,” and not taking over 14 hours per semester. She managed enough energy to really enjoy college life, for which I was very thankful since she had missed out on many high school activities. She was able to hold several jobs during college, including babysitting and working in the animal science department. She was even able to work in the summer for the animal science department where she had to feed cattle at 7:00 am every morning. It was a struggle for her to get up and go and be there at 7 am, but she never missed. That simply wouldn’t have been physically possible for her a few years ago. This year she started veterinary school through a wonderful program where students can start vet school a year early and finish their bachelor’s degree while also being in vet school. So fall semester brought a much more rigorous schedule than undergraduate years and much more study time, but she made it through.
When she started college and we left her alone in the dorm, I wondered if she would have to drop out because she wouldn’t be able to attend classes. When she started vet school, I wondered if she would have to drop out because she wouldn’t be able to make 8:00 a.m. classes every morning. She has been blessed with friends she made in college, including her wonderful roommate whom she’d never met until they were assigned to live together freshman year – and now they are in vet school together – and her sorority sisters. They have been there to help her.
She has been blessed with her own determination and will. However, the fatigue of POTS is so overwhelming that determination alone cannot overcome it. Studies say that often those who get POTS are type A, achievers, intelligent. That’s true of those I know who have suffered from POTS. So it makes sense to me that their academic ability is also a blessing that will help them succeed and “catch up” when they are physically able. The “brain fog” that comes with POTS is also something they must overcome, and the medications can help with it. That’s where good, understanding doctors are needed. Joanna “aged out” of pediatrics in college, so she had to find a new doctor, and finding someone who knows or will learn about POTS and medications to prescribe is challenging. She also wanted to be able to manage without the meds, so had stopped taking them. In vet school she found she needed to be able to go all day every day and still needed the meds. We found a wonderful doctor who helped her to understand it’s ok to still take the meds – “If you were a diabetic, you’d take insulin. You need to accept the help for POTS.”
So, I want to encourage young people with POTS and their parents. While it seems like you will never be able to do what you did before or to achieve your dreams, do not give up. Even though it may take a long time, you will feel better and be able to do much more than you can today. Joanna has wanted to be a veterinarian really all her life, and it seemed very unlikely she would be able to reach that goal when she couldn’t even make it to middle school! For nearly 11 years, I didn’t know if I’d ever be able to write the story of a successful outcome for her.
Moms and dads and their friends who are searching for answers for these young people struggling with POTS – YOU are such a blessing to them. Keep praying and hang in there! My heart goes out to those with POTS who have no diagnosis and whose parents don’t know where to turn. You have done a lot for them by finding a diagnosis for them.
God bless you and keep you.