Doctors Need to Be More Aware of Chronic Illnesses Like POTS


Over the course of my illness, I’ve seen a variety of different doctors – GPs, emergency doctors and numerous specialists. Before my diagnosis of postural orthostatic tachycardia syndrome (POTS), I was branded a “medical mystery.” Even now, after my diagnosis, I have to fight to receive the standard of care I deserve.

The sad fact is that out of the dozens of doctors I’ve seen over the past few years, only one has made an effort to help me resume a normal life. I shouldn’t be grateful that they helped me with my challenging illness, it should be the norm. Previously, I had been passed from one doctor to another as they did not know how to help me, even though a quick Google search of my symptoms throws up many possible diagnostic pathways. One doctor even attributed all my symptoms to “emotional distress” and suggested I would feel better if I just went for a walk every day, even though I was complaining of chest pains and dizzy spells. As you can imagine, my condition deteriorated quite rapidly when I was seeing this doctor.

Even after my diagnosis of POTS, I still have to be an advocate for my illness. A recent trip to the emergency room with chest pains highlighted the fact that many doctors still have very little awareness of chronic illnesses.

“You just said a lot of words,” the doctor said to me.

“No.” I replied. “I just told you the name of my illness.”

Due to the poor standard of care I’ve received from many doctors, I am now filled with anxiety whenever I have to see a new doctor. I know from reading about other people’s experiences that I am not alone in this. So many people with chronic illnesses face delays in their treatment because doctors are just not aware of them. I am grateful for the doctor who has helped me manage my challenging POTS symptoms. It has made my life so much easier now that I have a doctor who understands the debilitating effects of my illness. Everyone with complex medical needs should have access to a compassionate doctor who will listen to their long list of symptoms and will help them to manage them. Unfortunately, these types of doctor are rare and can be the difference between resuming some normal activities and being bedridden for months on end.

POTS is not a rare illness, it is just rarely diagnosed due to lack of awareness within the medical profession. This needs to change if those with POTS and related conditions are to resume a normal life.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Wavebreakmedia.

TOPICS
JOIN THE CONVERSATION

Related to Postural Orthostatic Tachycardia Syndrome

people boarding a train at a station in london

Why I'm Raising Awareness of Dysautonomia After My Experiences on the Tube

So originally the idea for this blog article was born from frustration and I was unsure really even of the point other than to publicly rant about life as me. However, that all changed when I realized October, being Dysautonomia Awareness Month, was actually the perfect time to use both my experiences and the material I [...]
illustration of a woman blowing purple flower petals

The Incredible Everyday Acts of Kindness I've Been Shown While Battling POTS

It’s always the simple things. The smallest moments bring the greatest kindness to me. For the past nine years, I’ve been living with POTS (postural orthostatic tachycardia syndrome). Some years are better than others. Some months and some days are better than others. Evenings are always better than mornings. Right now, I hope I’m in [...]

5 Things Your Friend With Chronic Illness Wants You to Know

Or, at least, here are five things this chronically ill friend wants you to know: 1. I’m not being dramatic or seeking attention in any way. Quite the contrary, actually. I work in the emergency room and I know what symptoms or vital signs get you attention, quickly. Because of this, I am incredibly hesitant to [...]
mother at the movie theater with two kids

The Truth Behind My Smile You Can't See in This Photo

I’m forever telling people, “Don’t judge a book by its cover,” because so, so many disabilities are invisible. This isn’t just something I preach on my blog. It’s a mantra I live by. I often find myself vehemently describing how difficult things can be for people who appear perfectly fine. I’m almost as often shot down [...]