Read reflections by people living with a rare disease.
Natalie's reflections on learning to accept, cope with, and learn from her rare disease.
Something I often think of is the life I lived before chronic illnesses. I was athletic and outgoing, always laughing and smiling and spending time with my friends and family. I didn't have a care in the world because I was healthy and strong. Reflecting back on those good times can make one's heart ache with a longing for what was once had.
However, that doesn't mean you cannot obtain a happy life with chronic illnesses. The world, I have come to discover, is still yours for the taking. So long as you have enough faith in yourself to reach out and grab it.
An emotion I continuously push away is grief. I refuse to give in to the overbearing sensation of sadness these memories tend to conjure up within me. People tell me how inspired they are by my story, how my strength to remain optimistic during trying times encourages them to do the same. However, what people don't see is a girl crying her eyes out to her mother when she can barely concentrate on her homework because her brain fog is clouding her memory. They don't see a girl who feels as though she ran a marathon when in reality, all she did was take a trip to Target just to get out of the house despite the fact the car ride made her feel worse.
What people don't see can be deceiving.
I used to believe that feeling these emotions - sadness, frustration, vulnerability - was wrong. I felt as though I was the one at fault. I felt as though I was lying, not only myself but to those who called me an inspiration, who looked up to me because I was able to keep my spirits high during trying times. I felt like a failure.
There are many times I feel guilty for grieving the girl I once was. I am no longer that girl without a care in the world. I am now consciously aware of my body, of the struggles it faces day in and day out.
I will never be that girl again, and that is okay. I am stronger, wiser, and more mature now. I love the girl I am today and have come to love her body with all its defaults. I have learned that it is okay to grieve, to cry, to crave the life I had before chronic illnesses waltzed into my world. But I have also come to accept this life as my new normal.
Elle's reflections on identity and rare disease.
Before being diagnosed with a rare disease, my identity revolved around who I was and what I could do. I was a quiet, homeschooled, blindingly pale redhead growing up surrounded by the richly diverse cultures of Tampa, Florida. I had a small group of trusted friends, and at age 15, I had competed in elite level gymnastics for nearly a decade and was proud of the mentorship role I had earned on my team. I was a straight A student and within a year, I would earn a PSAT score good enough to become a National Merit Scholar. I was starting to think about the future, college, and all the adventures I wanted to go on.
But after a sidelining injury in the fall of 2014, my life was never the same. I had fractured my ankle in an attempt to miss hitting someone who had carelessly crossed my path mid tumbling pass. It was a bummer to miss the rest of the season, but I’d only have to wait 6-8 weeks to get back at it, right? Wrong. Seventeen weeks of various combinations of casts, boots, and crutches later and I was still in horrible, ever-worsening pain. A week after my 16th birthday, I was diagnosed with a degenerative neuromuscular disease called Complex Regional Pain Syndrome (CRPS). I didn’t know it at the time, but I would soon find out that CRPS is the most painful disease known to modern medicine.
As my condition worsened, I began to lose pieces of my identity, one by one. First, I had to quit the sport that I had loved and poured my heart and soul into since I was a little girl. Then, as my body deconditioned, I lost what little self-esteem I had had as a fragile, teenaged girl. Further damaging my mental state, I began to hear rumors that the teammates I had loved like sisters where saying that I had made up my illness as an excuse to quit gymnastics (my first taste of the “faking” explanation). As the hypersensitivities and comorbidities associated with CRPS became worse, I lost my freedom to roam about in the outside world as it became too bright, too loud, too stressful, too utterly, painfully overwhelming with stimuli. By the end of summer of that year, my days were spent in a completely dark and silent room, lying as still as possible, avoiding touch or vibration of any kind—including those from bedsheets, voices, and the A/C—as they would cause pain so unbelievably unbearable that I could understand why my disease is nicknamed the Suicide Syndrome.
I was no longer smart, athletic, college-bound, or hopeful. I thought I had lost every part of the identity that I had valued so much. If I wasn’t any of these things, who was I? I didn’t figure it out until later (because at this point, I couldn’t even tell you my own name or the color of the sky if you had asked), but I still had one part of my identity left—the most important part. I was, and am, loved.
My mother, who I believe to be only second to God, never gave up on me. She drug me from doctor to doctor, treatment to treatment. She researched, fought, and hoped for me when I couldn’t. She drove me to doctors all over Florida, stayed with me at a clinic in Arkansas for two months, and finally drove me to Texas when all else failed. By the time I was in Arkansas, in the fall of 2016, I was pretty sure I wouldn’t see Christmas. As my body weakened, my organs began to shut down—first my endocrine system, then my digestion, and slowly my heart and lungs, among other things—as if my body was mimicking the loss of hope I had experienced in the previous years. But my mom was prepared to fight until my last breath, and I thank God every day that she did.
When you have a rare disease, there is almost never a standard of care, so you never know what will work and what won’t. It’s exhausting to be disappointed over, and over, and over again. It is pretty easy to give up and stop trying, especially when your disease is already draining so much life from you in the first place. That’s why it’s so important to have friends or family (you’re really lucky if you have both) who can fight for you and encourage you to keep going. Because you never know when your Texas will be right around the corner.
It was nothing short of a miracle—Texas. A simple electro-stimulus device called VECTTOR saved my life in the matter of about a week. I wasn’t healed in that week, but I got back something I hadn’t had in years: hope. Slowly, I saw the pain dim, my organs regain function, and eventually I began to plan for the future again. I got to see Christmas with my family—enjoy it even—and less than a year later I even went to college with my brothers in Michigan. I’m better now, but I’m not cured. I still have a laundry list of symptoms, including a small, yet significant fraction of the pain I had before, and I have some limitations. But now I also have hope and a life.
As for my identity, I still struggle with it. I fall into the trap of defining myself by my disability, rare disease, major, friends, lifestyle, etc. all the time, but all of that can change—as I’ve learned. The one part of me that has never changed is the fact that I am loved—by both my mom and by God, most importantly. It can be hard to remain in that identity, especially when I struggle with the other things that vie for importance in my life (like those listed above). But ultimately, when I had nothing else, I had love. And it wasn’t my love, it was someone else’s; I didn’t need to do or be anything to have an identity and a purpose. How amazing is that? When I gave up, that perfect, selfless love saw me through. It was enough to pull me through when I was in pain, hopeless, and facing death, so I know that it’s enough for any situation I will face.