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.

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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.

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You Don’t Owe It To Anyone To Try Every Treatment

Two weeks ago I went in for an injection in my back. The doctor, instead of being focused on my pain and comfort, decided to use me seeing him as a platform to push alternative medicine on me. By the end of my time with him I was sobbing because I was so frustrated from not being heard. Since then I’ve come to the realization that I don’t owe it to anyone to try a treatment especially one that has not been backed up by science. I will no longer accept health care “professionals” who are judgmental about me not trying hard enough to cure myself.

In the beginning, 8 long years ago, when I first got really sick I tried everything. Every possibility of improvement I jumped on. Every time I got my hopes up and had them crushed again and again. As if that disappointment wasn’t enough, when these things didn’t make me feel all the way better it was always my fault. I must have not been following the diet close enough. I wasn’t practicing hard enough. No one considered the possibility that the treatment, one that hadn’t been verified as successful, just didn’t work.

When alternative medicine gets pushed on patients it is the patients that get hurt. Dealing with having your hopes crushed over and over is hard enough. Dealing both with that and with feelings of inadequacy when you are trying your best is even worse. In real medicine, if someone takes their meds and they don’t work they don’t get blamed for not trying hard enough. When one blood thinner doesn’t work me don’t blame the patient for not trying hard enough to thin their blood; instead the dosage is adjusted or a different medication is used. Real medical professions realize that medications and treatments work differently for different people.

You can bet I will be writing more on the subject, but here are some ridiculous highlights that came from my surgeon:

“Just try an anti inflammatory diet. I did and I feel like I’m 21 again!”

Talking to someone who has been in a ridiculous amount of pain since they were 18 about how you felt 21 is insensitive. Youth does not always mean health.

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“You’ll lose 21 pounds in 21 days.”

What are you an infomercial?!

 

“Inflammation is the cause of all your problems; you just need to cut it out.”

Actually, my genes cause all my problems. No diet will change that. Also, inflammation is not always a bad thing. It helps us heal, it lets us know when there is a problem. Saying an anti-inflammatory diet will fix everything is oversimplifying things. Didn’t you go to medical school?! Or we using “doctor” in a looser sense?

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“Do you eat gluten? You haven’t cut it out. That is your problem.”

I have cut it out. I tried that. Do you think you’re the first person to tell you that? Cutting out gluten is not the solution to everything.

 

“People drive from Kansas just to get this list, but I’m going to give it to you for free.”

Great a list of potentially dangerous supplements and unwarranted “medical” advice. My favorite.

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“Actually there is an entire edition of a journal dedicated to this.”

Yes, there are articles in academic journals about anti-inflammatory diets. They are written by chiropractors and nurses who monetarily profit from people trying anti-inflammatory diets. There is almost no information on any actual science behind it from credible sources. Just because the article is in an academic journal doesn’t mean it is reliable.

 

“You need to get off opiates.”

He said this one to me as I was sobbing in pain in front of him. He is not the doctor that manages them, it was not his business. He also said this after telling me that the nerve in my back was pinched and asking if I had surgery scheduled. When someone dislocates their shoulder they are given opiates. EDSers deal with that pain daily all of their body, but then are judged for needing pain relief. I haven’t slept a good nights sleep in four months due to pain, but yes I’ll stop opiates right away.

 

“You need to try biofeedback.”

I have. I even use some techniques for relaxation, but it didn’t cure me.

 

“You just didn’t see a good one.”

I saw one who is an expert to my condition.

 

“You have to practice more.”

I was practicing even more than they recommended. I tried at it. I really did, but when alternative medicine fails it is always the fault of the patient- not the alternative medicine.

 

“I treat people with EDS all the time.”

He had no understanding of EDS, prescribed me muscle relaxers (contraindicated to EDS), and obviously had no grasp of the condition. I really hope he was lying here and that no one with my condition has had to deal with his ignorance.

 

“Just try what the doctor is recommending.”

This one came from the judgmental nurse on staff. She said this after the doctor was done spewing his pseudoscience and after I had already said that I had done the research and there wasn’t science to back it up AND that I couldn’t eat most of what is in their proposed diet. Chronically ill people don’t deserve to be shamed for not trying things that are not backed by science.
Life with a chronic illness is hard enough. We don’t deserve to be harassed by people for not trying a treatment. I’m not saying that all alternative medicine is evil. For example, massage has helped me wonderfully. What I am saying is that people with chronic illnesses do not deserve to be harassed or judged for not trying hard enough for not trying every treatment under the sun.