The Problem With Telling Patients They Will Grow Out Of POTS

Telling a young person with a chronic illness that they will grow out of it sounds like fantastic news. With POTS, it is a trap that is easy to fall in. It feels lovely to give someone hope and good news who is obviously suffering, but when it is false hope it can cause some serious issues. It may sound strange, but when we are waiting for something horrific to end we stop actively living our lives. Everything becomes about what will happen after this terrible phase in their life. “I’ll finally start dating once I grow out of it.” “When I grow out of it I can have a social life again.” “When I grow out of it I can finally travel.”

As many as 1 in every 100 teens has POTS. Sometimes these teens grow out of POTS in ways adults seldom do. I was diagnosed with POTS when I was 18. Because I was right on the borderline it was assumed that I would grow out of POTS. I had at least 5 different doctors inform me I would grow out of POTS.

As a result, I stopped living and just survived, always waiting. When people are just living out the time in their life waiting for when things change very little joy enters their life. Waiting leads to not seeking out the things you love and not connecting to the ones you love. All the joy and happiness in your life is always in the distant future. Depression seeps in and for awhile you can withstand on hope for a healthy future alone. But when year after year it doesn’t come it gets harder to believe that things will change and suddenly all that you were living for slips away.

And the hope did slip away.
As I got older doctor’s stories changed. Instead of the confident outlook they had at 18, 19, and 20 things started to change when I turned 21. At 21 they told me, “You’ll probably still grow out of it.” I was heartbroken when it wasn’t true. At 22 they told me, “You could still grow out of it.” I was dismayed. And at 23, “It is unlikely you will grow out of it.” By 23 I was destroyed. At 24 and 25, there is no talk of growing out of POTS.

False hope hurts.
I started to feel lied to- stupid for looking forward to things. Not growing out of my condition led to a dissipation of trust, especially of the doctors who gave me false hope. Sometimes doctors in general. Why should I ever listen to them? I was convinced that because they lied to so many times and would do it again.

False hope keeps us from coping with our illness.
When my illness felt temporary it was easy to just be in denial. I would pretend to be healthy, then push myself too far and be bed-ridden for weeks. I would try to go out with my friends, keep up with them, and then not be able to walk for the next two weeks. I convinced myself I was still a normal healthy teenager then came crashing down. But nothing was wrong. In doing so with my illness, I hurt myself in this stage of denial. Because it was all temporary I didn’t even bother dealing with my condition. As a result, I missed out truly living. If I had learned to manage and cope with my illness I wouldn’t have missed out on so much of life. I would have spent that time adapting instead of waiting. I could have spent that time learning to be happy despite my condition.

In the year before my 24th birthday, I came to terms with the fact that I am not one of the people who will grow out of POTS. Since I have had the best years in terms of coping. In no way has any of this been anywhere near easy. Letting go of that false hope, disappointment, anger, and frustration really helped me actually deal with what was happening and move on to live my life. I learned to cope; I adapted to survive.

I truly understand the instinct to tell people they will grow out of the condition. Even at the Dysautonomia International Conference, I found myself saying that I hope others would grow out of POTS. I know that false hope has made things harder for me so why would I impose that on other people? We want something to hold on to and to give others to hold on to. We don’t want to admit that the reality is that this is something we will have to deal with indefinitely. However, learning to adapt to POTS and live life despite it made for a far more satisfying life than waiting for it to pass.

My advice to anyone, likely to grow out of POTS or not, is to adapt and learn how to live your life and find happiness despite your condition- whether temporary or forever. Waiting for it to get better and putting your life on hold will only hurt you more. It is okay to have hope but don’t let your hope leave you frozen in place.