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.