Not Just Surviving, but Thriving

Learning to live with Ehlers-Danlos Syndrome, or EDS, is a continuous process. Over the past few years, I’ve come to the realization that I don’t just want to “survive” being chronically ill. I want to thrive while being chronically ill. While I’ve accepted that my illnesses present many barriers to what I’m able to do and how I’m able to do it, I won’t accept that as a dead-end. I’ve been motivated, ambitious, a perfectionist, and passionate since I was a little girl, and though being ill has changed my life, it will not change that about me.

Accepting that you will have to live with chronic illness for the rest of your life can be a threatening thing. It’s scary enough not knowing if I’ll be able to function properly tomorrow, let alone think about what my life and illness will be like in five or ten years. This unknown and unpredictability of chronic illness is frustrating and intimidating, so I’ve decided that I’m going to take control in my life in ways that I am able to. While I can’t control how my illness affects me, I can control how I deal with it. Some days, my pain or fatigue is so severe that I am not able to get out of bed. Other days, I’m able to go shopping with friends or attend a concert. I’ve decided that I will take advantage of both of these situations. In regards to days where I feel so badly that daily tasks are difficult, I’ve come to the realization that rest is the best thing to do for my body. I’ve had to reframe the way I think of rest, and remind myself that I am not being lazy, but that I’m taking the time I need to recover so that I can be successful. In regards to days where I have more energy and feel better, I’ve decided that I will do all I can to make sure that that continues.

In middle school, I fell in love with yoga. At the time, I did not realize that I was so good at it because of hypermobility from my EDS, but I loved the peace and the exercise that yoga provided. Since then, many doctors and physical therapists have told me to never do yoga again. Recently, Kendra Neilson Myles has helped me realize that I can still do what I love and make it work for my body. When I first attended one of her restorative yoga classes, geared towards people with EDS and hypermobility, I was so excited to reclaim one of my passions. During this class, hosted at the Mindfulness Center in Bethesda, I learned how to do yoga while protecting my hypermobile joints from dislocation. But more importantly, I learned that having EDS did not need to limit me. While I do have to avoid certain activities and make certain accommodations to my daily routine, I am realizing that I don’t have to stop doing the things I love. I just have to careful and patient with myself.

Five years ago, Kendra founded EDS Wellness, a non-profit organization that aims to promote “health education, integrative healthcare, and wellness strategies for living well with hypermobility syndromes, such as Ehlers-Danlos syndrome (EDS), connective tissue diseases, and related comorbidities.” Kendra, who also has EDS, created EDS Wellness to share her philosophy living with EDS. Kendra does not consider herself “chronically ill.” While she acknowledges that she has EDS, and that its sometimes severe and debilitating symptoms affect her life, she does not let it get in the way of living her life. Kendra believes that remaining active, in any way you can, and remaining hopeful are the keys to health. While she does not necessarily consider herself an advocate for EDS, or claim to be the authority on living with EDS, she knows the value of healthy and active living on chronic illness, and wants others to discover it too.

 

“This is the prime of my life. I’m young, hot, and full of…Moderate-to-severe joint pain.”

When I first came across the picture above, I could not stop laughing. A friend encountered it on the internet, and sent it to me saying “Dineo, this is so you!” And she was right! “This is the prime of my life. I’m young, hot, and full of…Moderate-to-severe joint pain.” I didn’t only find this statement funny, but I also identified with it. This pair of cards in the Cards Against Humanity game have summed up perfectly what it’s like to be a young adult living with a chronic illness.

Being chronically ill as a young adult is an interesting predicament. At this age, we are expected to be going to college, starting our careers, and beginning to make our impact on the world. While that’s a lot of pressure for any young adult, it’s even more pressure for young adults with chronic illnesses. While I would love to just worry about my education, career, and social life, I also have to worry about my chronic illness. The fact is, chronic illness can, and most likely will, affect every aspect of your life. It affects how you feel, what you’re able to accomplish, how you see the world, and how the world sees you. I’m often told that I “shouldn’t let my chronic illness control my life,” or that I have to remember that I am “not my illness.” But the truth is, my chronic illness is a part of me that I can’t remove or ignore. And, I’m okay with that.

For most of my life, I have seen my chronic illness as a completely negative thing. I focused on the fact that it gave me debilitating symptoms, made doing everyday tasks difficult or even impossible, and prevented me from achieving my goals and living my life to my full potential. Now, I realize that because chronic illness is something I will have to deal with for the rest of my life, I have to make the best of it.

I often look for inspiration in dealing with my illness from my friends who are also chronically ill. My friend Emily Deaton, a student at James Madison University, is one of those people that I look up to. Like me, Emily has EDS (Ehlers-Danlos Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia). Emily feels that her illnesses affect “every single aspect of [her] life.” Because of chronic pain and joint dislocations from EDS, and heat intolerance from POTS, she’s no longer to participate in her family tradition of hiking in the summer. She has also had to adapt the way she hangs out with her friends as a result of her illness. Instead of going out and partying every weekend like “normal” college students, Emily spends time with her friends doing more low-key activities. For a chronically ill young adult, sometimes the most we can do on a Friday night is stay in and watch Netflix. Balancing the responsibilities of college and adult life with the responsibilities of being chronically ill is also something Emily has had to figure out how to do. As a college senior, she has to consider her health, which is oftentimes demanding and unpredictable, in future plans that she makes. Getting through each day with the symptoms of a chronic illness is a challenge, and planning for the future is an even bigger one.

However, Emily has been able to find positivity in being chronically ill. As young adults, we’re expected to be forming our identity. That can be difficult when being chronically ill is such a large part of our life and experiences. Emily believes that being disabled is part of her identity, and while she does not let it control how she thinks or acts, she embraces it the best way she can. Being chronically ill has made Emily more empathetic, and also made her better at defining her boundaries, socially, academically, and otherwise. Being chronically ill has also motivated Emily to become an advocate for chronic illness. Additionally, her illness has motivated her to write for The Mighty, an online publication dedicated to facing disability, disease, and mental illness as a community. And most recently, it has led her to intern with Dysautonomia International, a non-profit organization that aims to support people affected by Dysautonomia.

“The Girl Who Cried Zebra”

When most of us were children, we heard Aesop’s fable “The Boy Who Cried Wolf.” Adults read us this cautionary tale to discourage us from lying, and from this fable, we learned that if you lie that you are in danger to get attention, no one will believe you when you are truly in danger. No one wants to be “The Boy Who Cried Wolf.” We all want to be believed and taken seriously, especially when we are telling the truth.

“The Boy Who Cried Wolf” was a story of my childhood, and “The Girl Who Cried Zebra” was a story of my adolescence. Ever since I can remember, I have suffered from chronic pain and fatigue. Even as a little girl, running around the playground was difficult, and riding bikes hurt. I would always get tired faster than my peers, and I preferred staying inside and reading to going outside and playing sports. For most of my life, I thought maybe I was just weak, or even lazy, but when I started puberty, I knew something serious was wrong.

While it’s normal for girls’ bodies to go through changes when they reach adolescence, it’s not normal for Them to develop chronic and debilitating symptoms. Doctors assured me that my pain and joint dislocations were just “growing pains.” They tried to convince me that my fatigue was just caused by depression or stress. They said that my gastrointestinal symptoms were just manifestations of an eating disorder. They told me I was fine, that nothing was wrong, and that I would feel better soon or grow out of it. I didn’t feel better soon, and I didn’t grow out of it. Even though I knew in the back of my head that something was wrong, I began to doubt myself. My doctors dismissed me so quickly and often that they almost made me believe that I was being overly dramatic or faking my symptoms.

Years later, my symptoms had progressed to the point that I knew something was wrong for sure. Maybe it was because I was getting older and becoming more sure of myself, or maybe it was because I could not continue to ignore the fact something was wrong with my body, and it was worsening as time went on. In fifth grade, I had to start wearing orthotic arch supports in my shoes because of severe pain, and realized that I had “bad knees.” In sixth grade, I had to teach myself to write with my left hand, because crippling pain in my dominant wrist left me unable to. In seventh grade, I had to stop playing tennis, a sport I had just started playing and fallen in love with. In eighth grade, I developed chronic back pain that I knew was not “normal” for a 15 year old girl. In ninth grade, my gastrointestinal issues worsened to the point that I had started rapidly losing weight and could not eat most foods. In tenth grade, I started experiencing dizziness and fatigue so severely that it was difficult to walk or stand at times. By this point, I had been wearing support braces and taking over the counter pain medicine to be able to make it through each day. Each year, I had more health problems, and I was able to do less and less. At a time when I was supposed to be discovering who I was, I felt like I was losing myself. I was still able to go to school and continue with most “normal” activities, but everything I did was painful and tiring. I saw my peers go about their daily activities with ease, and I knew that it was not normal to feel as bad as I did every day.

When I was about 16, I discovered that I was a medical zebra. Thanks to my pediatrician who suspected that I may have Ehlers-Danlos Syndrome, I was finally able to put the puzzle together that I had been trying to solve for the past few years. Although I did not receive an official diagnosis of Ehlers-Danlos Syndrome from a geneticist until two years later, the day my pediatrician suggested that I could possibly have the illness, I knew that I had finally found an answer. That night, my mom and I went home and Googled Ehlers-Danlos Syndrome, which is more commonly known as EDS. After reading descriptions of the illness online, I knew that I had EDS. You would expect finding out that you may have an incurable, progressive, chronic illness would be traumatic, but the truth was, I had already been experiencing the trauma of the illness. I was already experiencing debilitating symptoms and watching my health decline day by day. Learning that I may have EDS was a confirmation that everything I had been going through was not just “in my head.” I’m pretty sure I cried tears of joy that night. (I’m holding back tears as I write this, remembering how much this moment meant to me.)

From then on, I made it my mission to learn all I could about EDS to understand it, and determine if I did in fact have the illness. As is the case with most chronically ill people, I still had to fight for doctors to believe me, diagnose me, and treat me after that point. And even thought I was pointed in the right direction, I still struggled to find information and resources about my illness. While I found general information about EDS from the National Organization for Rare Diseases  and the Ehlers Danlos National Foundation (now known as the Ehlers-Danlos Society), I struggled to find a website that had comprehensive information and resources related to EDS. I finally encountered EDSers United, a website that was a sort of a “one-stop-shop” for information and resources regarding EDS.

Nadia Bodkin, who I now consider a mentor, founded EDSers United shortly after she was diagnosed with EDS. In college at the time, Nadia struggled to find accessible and comprehensive information about EDS online. So, she founded EDSers United to give EDSers a sense of community and accessibility to resources and information that had been missing. While the Ehlers-Danlos National Foundation and other organizations for EDS exhisted at the time, these organizations lacked a sense of cohesiveness and community. Nadia filled that gap within the EDS community with EDSers United. Recently, EDSers United has become focused on developing the Wellness Institute for Rare Conditions. Her work with EDSers United has helped shaped the way advocacy organizations operate, and now, her goal is to “conduct and support basic, clinical, and translational medical research, and to investigate the causes, treatments, and cures for rare genetic conditions.” Nadia has a bachelor’s degree in nutrition, a master’s degree in genetics, and a doctorate in pharmacy. Her background in the medical profession has helped her be diplomatic in her advocacy, as well as given her valuable insight and connections to the medical side of EDS advocacy.

One day, I hope to become an advocate for EDSers like Nadia. My desire to raise awareness for EDS and advocate for those affected by the illness stems not only from my personal experiences, but also from my frustration of the systematic problem the medical field has in diagnosing invisible illnesses.  Knowing that many people with invisible chronic illnesses have experienced and will likely experience similar hardships in receiving a diagnosis and adequate medical care, in addition to the burden of living with a chronic illness, is unacceptable to me. Over the past few years, I’ve learned that I can’t control my illness. I must admit, this lack of control over my life and my future is terrifying. In fact, it’s the thing that scares me most about being chronically ill. Turning this fear, frustration, and resentment I have towards my illness into advocacy has helped me gain some of that feeling of control back. I know that (unless scientists find a cure), I will have EDS for the rest of my life, and it will most likely continue to get progressively worse as I age. While I don’t have a say in how my illness affects me, I do have a say in how I respond to it. I may not have the resources to cure EDS myself, but I have realized that I do have the resources to be a voice for EDSers.

The #Spoonie Community

The term “spoonie” comes from the the Spoon Theory , an anology created by Christine Misanderino to explain what it’s like to be chronically ill. Christine Misanderino is an award winning writer, blogger, speaker, and lupus patient advocate who has had an immeasurable impact on the chronically ill, or spoonie community. In creating https://butyoudontlooksick.com, Christine Misanderino created a much needed forum for people with chronic illnesses to communicate and share resources.

At the beginning of my chronic illness journey, doctors were not very understanding or knowledgeable about my illness. So, I turned to the internet and social media to learn more about it. What I found was invaluable. Because of connecting with the spoonie, or chronic illness community on social media, I was able to learn more about my illness, learn how to advocate for myself, and find friends who were dealing with similar struggles. After discovering that I may have Ehlers-Danlos Syndrome, or EDS, I found the spoonie community through Twitter. This was over five years ago, so I don’t remember exactly what I searched to discover it. But, I am so thankful that I did though.

About five years ago, I met my friend, Katelyn Waszak, on Twitter. As a teenager in the digital age, I’d been warned of stranger danger and internet safety. But, the potential of connecting with people who also had EDS was too valuable to pass up. So, I got to know her slowly and carefully. Before I knew it, we were closer than some of the friends I had made in “real life.” A couple of years older than me, Katelyn was almost like my big sister in the spoonie community. While our friendship was founded on us both having EDS, we connected on a personal level as well, becoming part of each other’s support systems. Katelyn became someone who I could vent to about anything, health related or otherwise. She understood what I was going through, and gave me advice and comfort that others were sometimes not able to give. She also helped introduce me to other spoonies with similar illnesses, and resources that had been helpful for her in dealing with her EDS as a young adult.

Before I connected with the spoonie community and found friends and resources on Twitter, Instagram, and Facebook, I felt as if I was going through my illness alone. I did not know anyone else who was experiencing what I was, nor did I have concrete explanations to what I was experiencing. Having the opportunity to meet and learn from other spoonies gave me a sense of comfort and hope that was necessary in my moving forward with my illness. Once I learned that I was not alone in my struggle, I knew then that I was not “crazy,” and that I had tools to help me deal with my illness, and a community to fall back on when those tools did not work.

In this podcast, I interview my friend Katelyn about her experiences being chronically ill, especially as a young adult. We also talk about what the spoonie community means to us, and how it has helped us in our chronic illness journeys.

“Healing is not Linear”

When you live with a chronic illness, you often hear the phrases “Get well soon!” or “Are you feeling better yet?” And while these statements are often well intentioned, many people do not understand that it’s not possible to “get well soon” when you have a chronic illness. That’s the point of chronic illnesses: they’re chronic. That is, they are long-term and sometimes life-long. Being chronically ill is not like having the flu or having surgery. You may never completely “get better.” While your condition may improve with time or treatment, it oftentimes doesn’t. And even if you feel better one day, you may flare up or relapse and feel worse the next day. http://thefrizzkid.tumblr.com illustrates the complex nature of healing perfectly in her graphic “Healing is Not Linear,” pictured above. Whether relating to mental or physical illnesses, healing is never a straightforward process. Even as someone affected by chronic illness, this took me years to learn. In fact, it is something that I am still learning every day.

Society does not teach us about chronic illness. As a result, many of us don’t understand the concept that it’s possible to be sick indefinitely. In our western culture, we learn that illnesses can be cured by medicine or surgery, but we don’t talk much about illnesses that can’t be cured. The truth is, chronic illnesses are responsible for half of deaths and disability in the United States. Whether it is attributed to a lack of awareness, a lack of understanding, or a lack of empathy, many people cannot grasp the concept that people which chronic illnesses are sick and may never get better. That being said, society puts a lot of pressure on chronically ill people to heal. Our doctors want us to heal because it is their job to heal our illnesses. Our family and friends want us to heal because they love us and want us to live full and happy lives. Some people just want us to heal because they don’t know how to deal with chronic illness, and having us be healthy would solve that problem. We want to heal because we don’t want to be sick; we want to be healthy too! But often, we are the only ones that accept that healing in the sense of “getting better” is not always possible. It’s hard enough to accept that we may never get to live the lives we know we would otherwise be capable of, and it’s even harder to try and convince others of that reality.

Even though I know that Ehlers-Danlos Syndrome is a genetic illness, and it will not go away until the genetic defect that caused it is found and cured, I still expected my “healing” to follow some sort of logical trend. Since my diagnosis, I have known that my illness will likely get progressively worse. Nonetheless, I still expected to see gradual positive results from physical therapy or medications. At the very least, I expected to see gradual negative results from the progression of my illness. But, as is often the case with chronic illness, things have not been so black and white.  While my illness has definitely progressed in terms of severity of symptoms and damage to my body, I have also learned how to manage those symptoms much better. I often have to remind myself that even though my symptoms and overall health are worse than they ever been, I am dealing with them better than I ever have.

As time has progressed, so has my illness. But more importantly, my conception of healing as also progressed. I’ve realized that my body is not a machine. I’ve also realized that because each person experiences illness and disability differently, each person experiences healing differently. To me, healing means making the best of what you are given. Some days, that means improvement, some days that means taking a break to get the rest I need, and some days it simply means coping.

Since everyone experiences chronic illness and healing differently, I interviewed my friend Laurel Ferretti to find out how she views healing from a chronic illness. Laurel, who attends George Mason University with me, was diagnosed with Chronic Lyme Disease in high school. While Lyme left her bedridden for five years, Laurel maintained hope through her faith. As a Christian, Laurel grew up with a strong faith in God. But, when she became ill in high school, her faith was tested. She wondered how God could allow her to suffer as she was. It was not until she realized the importance of her agency in her faith that she was allowed to be healed by God. One day, Laurel came to the realization that she had to actively seek her faith in order for God to heal her. While Laurel believes that medical treatments did have a hand in her healing, she attributed being able to get through being ill to her faith. Her faith in God helped her find hope where she did not see it before, and taught her how to give herself grace as she was healing.

Dealing with Chronic Lyme Disease was the hardest battle that Laurel has ever fought. But in that struggle, she discovered her passion: writing. When I think of Laurel, I think of a kind and thoughtful friend, and talented writer. Since I see writing as such a large part of her life, I was surprised to find out that it had not always been her passion. While she was ill, writing served as an outlet to allow her to process her feelings. While I gain comfort in making sense of everything relating to my illness, Laurel is “very comfortable with not making sense of everything.” Because chronic illness is often traumatic to experience and process, Laurel finds writing useful in expressing her thoughts and experiences without necessarily digging deep into the details of her illness. Because she wants to “approach illness from a point of hope, even if it’s not explicit,” Laurel writes poetry. Through writing, Laurel has been able to find healing, and turn her pain into purpose.

Here is a video of my friend Laurel Ferretti reading her poem “Shall We Dance” about her healing from Chronic Lyme Disease. Even though I have a different illness than Laurel, and I don’t use faith in God to cope with my illness, her poem resonated with me in a profound way. It showed me that although we may experience different struggles and deal with them in different ways, healing is powerful and transformational, and it is worth seeking.