10 Things I Learned While Living With a Rare Illness

I was diagnosed with a disease called arteriovenous malformations (AVMs) at the age of 4. I’ve had this disease since birth and went misdiagnosed for those first 4 years. Basically, AVMs are a tangle of blood vessels where my arteries and veins don’t connect properly. My high-pressure arteries go straight into my low-pressure veins with no capillary bed to mitigate this flow. This condition is rare, inoperable, and there is no cure.

I’ve learned quite a few life lessons living with this diagnosis for 20 years that I wouldn’t have if not for this disease. I’ve shared these with others within the chronic illness community and some seem to span across illness. So I hope this list of just a few life lessons helps you see into my world and the world of those living with chronic illness.

1. I am aware and scared of my surroundings at all times.

Due to my AVMs, I have an increased risk for spontaneous bleeding and I’m prone to bleeding more than the average person if I’m hit on my right side, where my AVMs are located. There is always a chance that I may get hit in the head and I will not be able to control the bleeding, especially when I’m near other people. It could be an elbow, a ball, or anything with enough force. Lately, it’s been that if I itch my head too much I’ll scratch the skin and start bleeding.

2. I can try my hardest, but sometimes the odds just aren’t in my favor.

Growing up, I tried everything. I did volleyball, basketball, soccer, tennis, swimming, and cheerleading but slowly each thing was crossed off the list due to the high risk of being injured. The extra blood flow my AVMs require also puts me at risk for an enlarged heart and going into congestive heart failure. This means I need to exercise to keep my heart healthy, but I can’t sustain an increased heart rate for too long or I start to have pain in my AVMs. I kept looking for an activity I could participate in without putting my health at risk. Thankfully, I found golf and yoga. They’re both considered non-contact sports and now I’m a certified yoga teacher!

3. Plan, plan and plan.

Whether I am finding a new home or going on a quick vacation, everything must be planned. How long would it take the ambulance to get to me? Where is the nearest hospital? Does that hospital have the type of specialist I need? I can’t forget to grab enough medication and make sure I have a medic alert bracelet in case I am surrounded by people who don’t know I have this disease. Everything needs to be planned out for the worst-case scenario.

4. To quote John Green, “Pain demands to be felt.”

Pain is real and quite consistent. For me, it rears its head at any given opportunity. Too many times have I gone to a concert and while my friends are carefree and having fun, I’ve been trying to block the pounding head and neck ache until I get home. Sometimes the pain is just that I’ve been standing too long and my body needs a break.

5. Having surgery doesn’t mean I can’t have fun.

Not everything is negative when living with a disease. My disease has allowed me to travel, for surgery, to five different states. I get to experience these places before my surgery and I can be pushed around in a wheelchair afterward to keep experiencing it. I have met so many people that I am honored to be able to call friends, and some are even considered family. These trips created memories I will never forget. I’ve been able to prank my doctors, dance on the operating table to One Direction, get tips on the best place to eat in town, and celebrate holidays in the hospital with the nurses.

6. Insecurity is inevitable.

My disease causes redness all throughout the right side of my head, neck, and part of my face. My right cheek juts out more than usual and I’m missing the top half of my right ear. No matter what age I am, no matter what makeup I wear, no matter who I am around, I will get insecure because of that. This insecurity comes from individuals staring at me from a distance, people gossiping about why I look the way I do, and even strangers coming up to ask questions like “what’s wrong with you” (and yes, that is the phrasing I have received from full-grown adults). I go through periods of body acceptance and not caring what others think, but whenever I meet someone new, that insecurity creeps right back in, and I feel like I’m back in elementary school afraid to put my hair in a ponytail.

7. Telling people I have a disease can be the most difficult thing I have to do.

Telling people is always the thing I struggle with the most. I avoid telling people if I know I will never see them again. What’s the point of going into one of the hardest parts of my life to someone I’ll never see again? I usually wait a few weeks before telling any new friends about my disease because I don’t want people to only think of me as this sick person. But, when do I tell them without it feeling like I’m hiding a part of myself? My disease has made me who I am and I’ve learned so much from these experiences and made amazing friends within the disabled community.

8. Friends are everything.

My friends are the ones who understand. If it’s one friend or five, knowing I have someone who will listen without bias or even keep me company when I’m not ready to talk about something has helped me make it through this life. They know my limits and don’t ask questions when I might have to stop or when I can’t do something. They act as if I am no different than them while knowing that I am. They remind me I’m not alone during all the highs and lows.

9. I am not alone, but I am.

My support system is wide and far and I will never be able to express my gratitude for that. Yet, no one really knows what I’m going through. I know other people with this disease, but each person has a unique set of circumstances. We will never be able to fully understand one another. I know I can talk to anyone, but I have no one who can truly relate to my feelings and situations. This can be hard to realize, but becoming more active in the disabled community has helped with this feeling so much. Seeing other people’s stories and how similar we all are has helped me accept where I am in life.

10. There is a lack of awareness about rare diseases.

Having a rare disease is just that. Rare. Many people will not know what I have. Most will never have heard of it. I have to be the one to educate them. When more people know and understand there are more opportunities, more fundraisers, more charities, and more funding for research and treatments. That is why I started my charity, Kelleigh’s Cause — to find others like me and let them know there is someone else out there. There is someone fundraising for research so you do not have to go through multiple surgeries a year. There is someone educating healthcare professionals. Spreading awareness is key to living my life. Yes, it can get exhausting having to describe my situation but I’ve learned when it’s necessary and when I can say I’m just a person living her life and I don’t need to explain myself. I was forced to become an ambassador for my disease when I was born, but I also have the power to be a role model and educator.