Doctors Need to Stop Disrespecting and Ignoring Rare Disease Patients

My entire life – well, the past 18 years – I have lived with a rare illness that many people, including medical professionals, have refused to acknowledge or help me receive the care and understanding that is necessary for me.

The condition is called Goodpasture’s syndrome, a rare autoimmune illness that can attack the lungs, kidneys or both. I only had kidney damage and was diagnosed when I was 6 years old. I can recall that I turned 7 when I was in the hospital, and couldn’t eat the birthday cake my grandmother baked for me because I didn’t have much of an appetite. Currently, I have about half of my kidney function and take steroid medication that has been prescribed to me on and off during the entire time I’ve had my condition. I will turn 25 this November, but when you’ve had a condition since childhood, you acclimate because you’re a child and have never experienced another life besides your own.

 

My condition has caused a significant amount of childhood trauma and has seeped into every aspect of my life, such as school, work and the ability to take care of myself. I have never had the “normal” academic path for school and over the past two years it has been difficult to find employment that is comfortable for me and conditions that don’t aggravate my symptoms, such as fatigue and migraines. I’ve thought about going back to school and pursuing a different career path, but it is so tiring and exhausting to create a schedule that fits your needs, and the possibility of working so hard to try and make it with little to no guarantee frightens me and pushes me away for wanting a better life for myself.

What has really surprised me in the past year and a half is how my mental condition has changed since I had a five-day hospital visit February of 2016. I somehow managed to survive my visit and all of the health care professionals did their job; but the effects of the stay have changed my mind permanently and how I view the medical system. I was always able to get “through” any event that happened and was able to move on in time, but with this past hospital visit, combined with other life events that have happened, the past six years of my life since I graduated high school feel incredibly wrong, unimaginable and destructive. I have always felt that I have been “screwed” or “passed by” and not even thought of by people. I look down when people talk to me because I’ve been put down my entire life and realized what I could have done to change past events if I was aware of myself and what I can control.

Constantly it has been a struggle to explain my conditions and what needs I have, or sometimes I have to decide if it’s worth it to explain my needs to a teacher or employer if I feel they would give me the empathy or understanding I need to make my situation easier. I understand it is hard to sympathize with other people if you have never had their experiences, but I truly wish others would have more empathy and true compassion for people who have a small or slight difference about them that isn’t problematic at all. I believe to be a health care professional, such as a doctor, you truly must have empathy and compassion to care for those who are in pain and facing difficult struggles and need help.

I’ve always been able to deal with anything that has come my way due to my belief that I was given incredible resilience and inner strength. People with rare conditions are able to deal and combat pain at incredible levels that many others would not be able to comprehend. I don’t know how I have been able to endure the never-ending oppression that has plagued my life, and sadly I came to the conclusion recently that I will never catch a break for the rest of my life as long as I have my condition.

But, I have been able to advocate for myself and learn what my care should be and alter anything I feel can be changed to guarantee a better outcome. Many health care professionals sometimes don’t have enough exposure and education on how to care for individuals like me and answer the questions we don’t know how to ask. I have been made to feel guilty and have been treated with intense medical discrimination simply based on my condition and not my true self. Many doctors have formed opinions on me based on my medical history and view me as a name, birthdate and medical ID number, not a face who has questions and concerns about her care.

To conclude, I want the medical system, especially specialists and the support staff involved to be open, aware, helpful and treat patients without discrimination, and most importantly treat their conditions. I will always have to fight back against people who treat me poorly and remind them and myself I need care and acknowledgment because for far too long I was ignored and struggled terribly for it.

Please know that if you have a rare illness or condition, you do not deserve to be treated at unacceptable standards and have the right to know all aspects of your care and, most importantly, ask questions to ensure you have clear transparency.

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Thinkstock photo via byryo.