I Thought My Chronic Illness Was My Greatest Weakness, But I Was Wrong

From the young age of 5, I can remember waking up in the middle of the night crying with aches and pains. By age 8, I began my first of what would be many visits with physical therapists. At the time, I was a competitive dancer who was far too flexible and accident-prone for her own good, and we later found out that Ehlers-Danlos syndrome (EDS) was to thank for this. By age 11, my dancing days came to an end after one too many fractures.

My doctor suggested that I cross-train, so I did just that and moved my focus to playing club soccer which I would continue to pour my heart into until the age of 15, when a strained calf muscle turned into the start of my complex regional pain syndrome (CRPS) journey. By age 16, I was a professional patient. My CRPS quickly spread full-body and once the dam of good health had broken, my life quickly became flooded with new health problems and diagnoses – dystonia, dysautonomia, postural orthostatic tachycardia syndrome, EDS, mast cell activation disorder, small bowel dysmotility, and the list goes on.

I was poked and prodded, scanned, imaged, filled up with meds, and even wheeled into the hospital for a week long stay. Despite all of this (and with the incredible support of my family, friends, and healthcare providers), I managed to graduate high school third in my class and ready to take on college. I had my heart set on becoming a physical therapist so I travelled 12 hours away from home to attend one of the best schools in the country for physical therapy. In retrospect, one could have predicted that being so far away from my family and doctors was not the best decision, but hey, hindsight is 20/20.

Things did not go as I had hoped and my health quickly deteriorated. After a year away from home, I realized that:

1. My life was not fit for the “up and move without any thought to how it would affect my health” lifestyle.

2. Going into a career where I would potentially have to support someone else’s bodyweight when I couldn’t even support my own without a cane was probably not best for me.

These were really hard lessons to learn at age 18, but they really did change my life. You see, I got depressed. I thought I was going to have to compromise my freedom (from doctors and caregivers) and my life goals for all that was ravaging my body. I thought that my own stupid chronic illnesses were my greatest weaknesses. Maybe it is necessary to go through this stage in the grieving process, I don’t know. What I do know, however, is that at some point you have to own up to your limitations. You have to realize that things will probably be harder for you than for someone who has never had a sleepless night from pain or has never relied on a handful of medications to make it through the day. It sucks. You have to feel it though… feel the hurt and the anger and the, “Why me?” because after you feel it, you can move past it.

It is all about a change of perspective. You can use your illness and your experiences to propel you through life. I have never bought into the idea that I was given all of these health problems for a reason. I do not believe that my purpose in life is to be chronically ill. However, I do believe in silver linings. I know that I was dealt a shitty hand when it came to my health, but I have now been exposed to the aspects of life that only someone who has personally had health issues (or been the caregiver of such) would ever be aware of. I realize that there is a massive gap in education for doctors on how to treat pain and efficiently identify rare diseases. I have seen the need for new methods of pain management that do not involve outrageous doses of pain medicine. I see how the insurance system in the United States needs to be reformed to care for those of us who need it most. I realize the lack of research for diseases that are coined “rare” but truly affect so many of my friends, my neighbors, and myself. I have been exposed to so much that has not always been pleasant, but I use it as my inspiration.

Today, I am living in the United Kingdom (because once you accept that you cannot just “up and move without any thought to how it would affect my health,” you can give thought to your health and make the proper arrangements) where I am finishing up my master of research degree in neuroscience and preparing to move to Italy to continue my research. Every day, I go into the lab and I feel so incredibly passionate about studying the molecular mechanisms of pain. I am so fulfilled because I am using something that should be my greatest weakness as my greatest strength. Don’t get me wrong, I still occasionally have my bad days, but they are far outnumbered by the days that I feel happy that I can use my unique experiences for the greater good. I encourage all of you to transform your illnesses into something that fulfills you. It doesn’t mean that you have to become a researcher or go into the medical field. It can be as simple as being an empathetic friend who can truly understand the hardships that others go through. Sometimes it is the smallest moments in life that are the most fulfilling.

At the ripe age of 22, I am now a chronically ill girl whose mission is to always turn her greatest weaknesses into her greatest strengths.

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