"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 seeing.