To some this post will not come as a surprise, but the rest may be stunned.
I’m not one to talk about my sicknesses or the harsh negatives that have shaped my life. In fact, up until this moment I have kept it to myself the best that I could. I’d rather put out positive energy than focus on bleak. But one day recently, I was experiencing awful pain from one of my rare diseases and it got me thinking. I have yet to speak out about my struggles. I have yet to help someone who feels alone in their battle with rare diseases. I have yet to do ANYTHING. So, here I am… speaking out.
My story does not unravel (nor is it told) in the perfect order. Though, I will start it off with this:
There’s a lot that goes along with having rare diseases. For me, hospitals became a second home, I met with doctors more than friends, 20 medications a day was normal, and precautions were crucial.
Approximately 8 years ago I was diagnosed with a rare nerve condition called Chronic Regional Pain Syndrome (CRPS). However, at the time of diagnosis it was referred to as Reflex Sympathetic Dystrophy (RSD). Constant sharp, excruciating pain flourished through my left leg resulting in the use of crutches and a wheelchair. Most nights I laid awake because the aggressive tremors and fluctuating leg temperatures were beyond intolerable. My leg was extremely sensitive to touch. The physical contact between my body and the sheets felt like knives scraping up and down my leg. The slightest touch sent my body into a fit. I remember laying in bed with tears streaming down my face begging for the pain to end. The pain was unbearable for the body and mind. As one could imagine, I became incredibly depressed. I felt like I had lost everything. At the age of 13, I was trapped. I was not able to participate in the typical activities teenagers experienced. And if I was involved, I felt alone. I just wanted to live life like everyone else. I didn’t want to be different.
Not much time passed before I was diagnosed for Postural Orthostatic Tachycardia Syndrome (POTS). However, I had previously been misdiagnosed with a seizure disorder a few years prior to developing RSD. My blood pressure was too low and my heart rate was through the roof. I had to be extremely careful when moving from a sitting to standing position because I was at risk of collapsing. It was all too much for someone my age to handle. This condition had no sympathy for me. I fainted in bizarre places like a parade, grocery store, and shower. I couldn’t catch a break. I had to drink an insane amount of fluids (100+ oz.) throughout the day to ensure hydration. People thought it was funny and I guess it was. But it was another serious condition that took away from my enjoyment of life.
In the midst of everything, I was diagnosed with yet another rare disease. Ehlers Danlos Syndrome affected my health as well. It is a connective tissue disorder that, in my case, tremendously affected my joints. It gave explanation to the pain and function of my joints. Contrary to the rest, this rare disease did not do too much harm to my physical and mental health. It was just another disease added to the list.
I seemed to be doing well by my freshman year of high school. Well, better. After intense physical and occupational therapy I was able to manage my RSD. Things became bearable and I was no longer using crutches or a wheelchair to alleviate additional pain. My POTS symptoms seemed to have subsided a bit as well. I thought I was in the clear. I thought life was looking up for me and it was for a while until my health began plummet to its worst.
I was diagnosed with Gastroparesis my sophomore year of high school. This rare disease took -what felt like- my life away from me. I experienced extreme abdominal pain. The pain was so severe that it began taking a toll on my nutrient intake. I was unable to keep much down. As a result, I was admitted into the hospital for two weeks. Because of the severity of my condition and the rapid weight loss, I was advised that a feeding tube was necessary for my life. A nasojejunal (NJ) tube was quickly placed for me to receive the proper nutrients for 8 months.
As a result of this disease, I missed all the major holidays. I couldn’t eat candy on Halloween, turkey on Thanksgiving, ham on Christmas, and so on. I also had to leave school and pursue online education to focus on my health. At the time, I hated it. I was angry, embarrassed, and depressed. I wanted the ability to eat on my own. This disease affected my mental health in the worst ways. I couldn’t look at myself in the mirror without wanting to rip the tube out. I would not take pictures willingly. I would not go out in public without a fight. I was mad at the world. I barely slept and when I did I was uncomfortable. I laid awake night after night begging God to make it all end. I felt alone.
Since then I have received treatment and have been well. But that’s the thing about rare diseases. There is no cure- just treatments and hope that they might work. I’m beyond grateful for my recovery and the procedure that got me to where I am today. I’m thankful to all the people who loved and supported me through the highs and lows.
Rare diseases are brutal. They rip your life to shreds and no one believes it because you look fine. You wouldn’t guess the amount of times people have told me that I “look great” while battling these diseases. I’ll give you a hint, far too many. I “look great”, but the insides of my stomach felt like they were going to burst. I “look great”, but my leg felt like it was on flames. I “look great”, but I fainted earlier today. But I was polite and I agreed. That was my issue. I always kept quiet and never shared the vicious reality of it all. So, speak out and share your truth. It is worth being heard.
Being sick is a nightmare. I can only hope that in sharing my story, it inspires you to keep fighting. I did and I’m grateful to be here today to act as a voice for those in need. Remember that you are NOT alone. Trust me, I understand the comfort in knowing that.
Today I am happy and healthy. Occasionally I will experience flares, but that’s the worst of it. I see life with so much more color now. I am back on my own two feet. But there is still that fear that I will spiral again and it haunts me. I think that leaves me with one last thing to say.
Appreciate life. Live it and love it for nothing is promised.
x Desiree
