Stephanie Emory

@stephanie-emory | contributor
Stephanie has fought a chronic, rare, and life threatening disease since childhood, dermatomyositis. She works hard to find purpose in her pain and tries to make this world a better place. The most important things to her are faith, family, friends and her felines.

When People Say I'm Not Trying Hard Enough With My Disease

When you deal with chronic illness every day since childhood, you realize very quickly that in general, most people don’t understand life with chronic illness. Of the many comments that have hurt through the years, the one I hate most of all is when people say or insinuate that I’m “not trying hard enough.” There are times that people have had the audacity to say this directly to me, or directly to my mom, who is my primary caregiver. Other times, people may not say it to my face, but I find out through others that they were saying it behind my back. And there are some times, though they may not say it in those words, I still feel it’s insinuated by other comments. Every time I’m asked why I can’t do something, I feel like people are making a veiled attempt to say I’m lazy or not trying hard enough. In truth, there are always reasons I do the things I do, and reasons I do not do the things I don’t do. For instance, I don’t drive because it’s not safe for me or safe for others on the road. Between chronic pain, lack of muscle control, and lack of concentration due to fatigue, I’m being responsible by not driving because the risk of a wreck is just too high. As an adjective, the definition of “trying” from the Merriam-Webster dictionary is “severely straining the powers of endurance.” I think the comment “you are not trying hard enough” is insane, for truthfully, chronic illness is one of the most trying experiences one can ever endure. Each day, I push my body to the height of my endurance, just trying to accomplish basic tasks most able-bodied individuals take for granted every day. Five years ago, I had lost so much muscle mass and strength that I couldn’t even turn over in bed; I could not sit up or stand up on my own. I somehow managed to walk extremely short distances, and my physical therapist credited my God-given tenacity for that, saying with the amount of weakness I had, walking should have been absolutely impossible. I had to walk cautiously, paying close attention to each step, and balancing against the hallway wall or else I would fall. Since then, I’ve slowly become stronger, but I still fight everyday trying to regain certain tasks. When you have a muscle disease, even when you beat the odds and improve, the abilities do not return overnight. It can take months and sometimes years to just regain a single ability. Even when I finally regain an ability, it will come only after many failed attempts of my best effort, and this can grow difficult and discouraging. Another reason this comment bothers me is because it implies that I somehow want to be sick. Just because I’ve come to a point of acceptance in my illness, and have found a way to have joy in my circumstances through my faith in God, does not mean this is what I would willingly choose for my life. In truth, I’ve had many setbacks with my illness, but not because I wasn’t trying hard enough. The worst flare came because I tried so hard I threw my body into a full-0ut flare, one that almost took my life. It’s essential that I am careful to try hard enough without trying too hard, or I will I actually cause myself more pain and illness. People with chronic illness are not lazy or underachievers. If anything, we are warriors. We live with what can feel like overwhelming circumstances, yet many of us find a way to continue to smile in the face of adversity. We fight an unrelenting and uninvited assailant every second of the day, one that we didn’t ask for and didn’t want for our lives. Yet we manage to keep going, keep smiling, keep finding ways to live our lives with purpose in spite of all that is against us. That’s not being lazy or weak; that’s being courageous and strong. So next time you are tempted to tell your chronically ill friends they “are not trying hard enough,” bite your tongue and instead take a moment to think about all the unknown battles they are facing each day. Take the time to learn, really learn about what they are going through. If you really open your heart and mind to their story, I am sure that you will find out that they are stronger than you could ever imagine.

Growing Up With Juvenile Dermatomyositis

For over two decades now, the word “myositis” has been all too familiar in my life. In December 1993, my life changed forever when I was given the diagnosis of juvenile dermatomyositis (JDM), the childhood form of the disease, at nine years of age. I had been sick for at least two years at the time, going to doctor to doctor trying to find someone who would listen to and take my symptoms seriously. I was always a frail child, and perhaps this disease was wearing on my body long before we knew, but at seven years old it started causing me to struggle in my everyday activities. Since then, dermatomyositis has been my constant and uninvited companion, following me around, at times with a vengeance, throughout my life. Juvenile dermatomyosits is a rare disease, thought to only affect around three to five children per million per year. It’s unlikely that you will meet more than one person with my diagnosis. Some people do not know anyone with my diagnosis. Even many doctors I’ve met through my life have not had a patient with the illness. Having a rare disease is a difficult journey. You are often met with skepticism—even from medical professionals—of the validity of your illness and limitations. Being young and sick is especially hard, because as a child you don’t realize that the way you feel is unusual or abnormal. I grew up thinking that pain was a normal part of the child experience, and even now I struggle to find a way to explain to my peers how my life differs from theirs. Sickness has always been a part of my life, and I cannot remember what it feels like to be healthy. To many people, the word “dermatomyositis” means nothing, but to me it means many things. It means a life altered and broken by an illness no one should have to endure. To me, it means over two decades of suffering greatly. It means painful muscles, a weakened body, and a skin rash that, at it’s worst, can feel like someone threw acid on my face. I’ve had so much inflammation that my body has responded by creating calcinosis, meaning that parts of my body are filled with rock like deposits, which can cause pain, discomfort, and in some areas, decreased mobility. The weakness of my body has caused certain muscles to contract, and the contracture of my left arm cannot extend, and will most likely never extend again. I’ve had so many people in my life doubt the severity of my illness simply because they’ve never heard of it — but make no mistake, this a severe, tough, difficult and debilitating illness. Along with the difficult to endure symptoms, the only treatments available are harsh and strong. I’ve been through a dozen different medications (not even counting medications like pain medications in attempt to manage symptoms) trying to combat this illness and get it under control. Among them are steroids, chemotherapy drugs and transplant drugs, all to attempt to kill the immune system that is actually attacking my healthy cells. There is a deep lacking in medical solutions for this illness, and we desperately need more research on easier to tolerate medications for this illness. The drug I am currently on — the drug I believe has saved me while allowing me to have some quality of life — isn’t even considered an official therapy for dermatomyositis. This leads me to believe there are solutions out there not even being considered. The prognosis of the disease, like many rare diseases, varies so greatly between person to person. It’s hard to know what to expect at the time of diagnosis. Some cases are easily controlled with medication and an individual may end up in remission, leading a life that is barely any different than someone who is healthy. The more severe cases are never overcome and prove fatal. I fall somewhere between these two extremes, having some years that are better and some years that are worse, but I am considered chronically ill and permanently disabled. Even at my best, the fatigue from the illness proved too much for me to be fully independent or able to work. My body would give out after one day of activity, and even something as simple as a minor cold could weaken me to be bedridden for days. At my worst, I lost nearly all normal function and ability to care for myself. At 26 years, I had to rely on my mom as my caregiver to help me with even the most basic of tasks. Despite my many physical challenges, I am thankful for my life. The disease has given me rare gifts, such as perseverance, compassion, and strength in faith, that I would not have without it. I also feel that one reason I am here on Earth is to be a voice for those with JDM — to lessen the isolation they feel by educating others about this illness. My hope is that raising awareness will create increased emotional support by peers, more funds and research on new and innovative treatments and more doctors who are properly educated in treating dermatomyositis patients. I stress being your own advocate. Do not be afraid to ask your doctor questions and do research on your own. It’s your life and your body, and it is your right to be involved in the process of choosing the treatments that are right for you. If you don’t feel like your doctor is well informed on myositis, or if he is not hearing or respecting you, keep looking for a doctor until you find one who you feel is looking out for your best interest. Above all, remember that your illness does not define you. Living with a chronic illness can be emotionally draining, and it is hard not to struggle with how that effects your self-esteem at times. I have found though, that a weak body does not equal a weak spirit or heart. In fact, many of the strongest people I know are my fellow myositis warriors. Do not give up, and know that you are not alone in this fight. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.