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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7 Things TV and Movies Get Wrong About Chronic Illness

Chronic illness is not regularly represented in movies and TV shows. Only recently have movies and TV shows about chronic illness been made popular. For example, The Fault in Our Stars, a love story about two teenagers with cancer was wildly popular with nearly $125,000 in box office revenue. Any representation of chronic illness is a step in the right direction, as an estimated half of all people have a chronic illness. The current representation of chronic illness often perpetuates common misconceptions about dealing with chronic illness.

Seven Things the Movies Get Wrong About Chronic Illness
Hard Work Can Cure Everything
We often see people who are paralyzed and injured struggling at physical therapy appointments. These struggles are intense and common in chronic illness, but one aspect commonly depicted of this struggle is not. Many of the chronically ill characters are cured simply by this hard work. There are a few scenes of them struggling and suddenly are cured of all symptoms. Many illnesses, like Type I Diabetes, won’t be cured with hard work. Symptoms may be kept at bay through activity, but rarely are their illnesses entirely cured.

Diagnosis is Fast
In movies or TV shows, we often see someone get obviously and visibly ill. The character suddenly faints or has a seizure then in the very next scene their illness is explained. In House, MD the most complicated cases the writers can think up are often solved within the time of a week on the show. In the real world, a lot of people do not immediately receive a diagnosis, especially those with rare or newly recognized illnesses. In rare illnesses, it may take decades to be correctly diagnosed. The process is exhausting and representing this problem in diagnosis is crucial to the understanding of what the chronically ill go through.

All Illness is Visible
The chronically ill protagonist is always obviously sick. They are in a wheelchair, on oxygen, or have lost all their hair from chemotherapy. Outside the movies, not everyone who looks healthy is actually healthy. This assumption is problematic to those of us with chronic illness. People assume you aren’t actually sick because every representation of chronic illness they have seen has been obvious and visible. In many illnesses, such as Fibromyalgia and Dysautonomia, patients may look healthy to outsiders.

Chronic Illness is Temporary
Occasionally movies and TV shows claim a character has a chronic illness, but the illness is not actually depicted as chronic. Characters are all either cured or die. The doctors, tests, pain, and medication is all shown as temporary. Audiences don’t see the daily permanent struggle that is faced by sufferers of chronic illness.

It Is All Cancer and Injury
There are so many chronic illnesses that people deal with, but usually only cancer and illness caused by injury are represented. Cancer and injury are easy fall-backs because they are easily understood, but there is no excuse for this lack of creativity and underrepresentation. There are plenty of chronic illnesses that make for compelling characters and stories.

Skip the Coping
Coping with a chronic illness is a huge struggle. Many patients grieve for their old lives and have to learn how to enjoy life in new ways. Coming to terms and learning to be happy with an illness is a rough and inspiring battle. By skipping this struggle and only showing illness as temporary, producers miss an opportunity to share these inspirational stories.

How Do We Fix This?
The more that chronically ill people share their experiences, the better the representation in the media will be. People have trouble understanding the issues chronically ill face and representation of chronic illness in the media is a step in the right direction. An accurate representation of this struggle in the media, TV shows, and movies would do wonders for awareness and understanding.