The Compassionate Care Patients With Rare, Chronic Conditions Deserve


A compassionate doctor to someone with chronic illness, especially rare conditions, can make all of the difference.

Yes, I realize compassion shouldn’t be the first quality to look for in a doctor — medical knowledge and experience should. However, I have seen some of the best specialists in the country and I often leave feeling defeated and depressed.

Maybe my symptoms aren’t real? Is it all in my head? He is supposed to be the best, wouldn’t he know if something were wrong with me?

No! In most cases, I have found this is not the case.

It has taken years. A lot of money, time and emotional bandwidth has been spent — but I have finally managed to put together a health team of doctors, physical therapists and nurse practitioners that see me for me.

In the quest for answers I have learned that it is definitely not all in my head. I have several, albeit rare, very real conditions and diseases that are life-changing and debilitating. Chronic illness is enough to deal with on its own and of all the people who should be helping us cope, it should be our medical team.

The first step was allowing myself to require compassion as a characteristic I look for in building my healthcare team. For a long time I felt like I didn’t deserve the compassion. I felt like I was just a job to my doctors and that I shouldn’t expect them to care about my emotions. But then I realized that our health is very personal, very sensitive and in many cases encompasses most aspects of our lives. So we do deserve compassion. We deserve respect. And if the doctor we are seeing isn’t providing that, it is OK to move on and to search for someone who understands.

So, to the doctors who may come across a patient with a rare chronic illness, please dig deep and find compassion. How would you want to be treated if your life was being turned upside down by something no one seems to understand — or even have the willingness to try and understand?

I understand that I may be rare. I understand that I do not present like the textbooks taught and that you may have never seen someone with symptoms like mine.

But that does not mean I am “crazy.” It does not mean that my symptoms are not real.

When you treat us like our symptoms and conditions do not have merit, we start to feel like you may be right. But in a lot of cases you aren’t right. Please just tell me if you don’t know. Help me find someone who does know, or who is willing to learn. Do not dismiss my pain just because it doesn’t fit into your perfect box. I am a person and deserve to be treated with dignity, compassion and respect.


Find this story helpful? Share it with someone you care about.


Related to Chronic Illness

Milky Way Galaxy over Mountain at Night, Deogyusan mountain

6 Truths About What My 'Good Days' With Chronic Illness Are Actually Like

Various people in my family have been using the term “good days” to describe how I get stuff done on a given day, versus understanding what I actually felt on that day. 1. My good days might not be considered someone else’s idea of good days. Most of the time, good days are thought up and [...]
writing in a journal outside

Why Writing is My Favorite Therapy for Chronic Illness

Writing is not everyone’s favorite hobby. Some like reading, sketching, biking, running, painting, etc. Everyone has some hobby or activity that acts as a type of mental break in their day. Some people head to the gym while others pop on some headphones. For me, it’s writing. It’s therapeutic for me in so many ways. Writing [...]
digital painting of young couple sitting on red heart symbol

To the Partner Who Doesn't Care About My Illness

I have loved you for a long time, and we have been through so much together, but what I’ve recently learned is this: You could care less about my illness. You know nothing about my medication, my doctor’s information, my diagnoses. You kind of know when my appointments are, but ask me all the time, [...]
Sleepy woman working with her laptop

When You Have to Get Used to Not Having Energy

Waking up is exhausting — showering too (water is a pain in the ass). It’s exhausting to put my clothes on. From the moment I get out of bed, I feel tired, like I wont be able to finish my day. Usually I try to go to school. The problem is, I just fall asleep in all my [...]