Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”-Kahlil Gibran.
Powerful in its meaning, this quotation attests that strength and growth emerge from pain and hardship. I am not only referring to physical scars, but also scars that cannot be seen; I have quite a few of both.
I am an advocate of Pelvic Floor Dysfunction and Interstitial Cystitis awareness. I believe there is power in standing up, speaking out, and exposing the reality of invisible illness.
For those of you who do not know, Interstitial Cystitis (IC) is a chronic, debilitating, and incurable disease of the bladder. Many have followed my journey of tests, diagnoses, and surgeries but few understand the extent of what I (and millions of others) go through each and every day. Harvard Health Publications states: “The discomfort can be so excruciating and difficult to manage that only about half of women with the disorder work full time. Their quality of life, research suggests, resembles that of a person on kidney dialysis or suffering from chronic cancer pain. Not surprisingly, the condition is officially recognized as a disability.”
I used to be reluctant in using the word “disability.” I have always pushed myself beyond my limits and many, many times I have sported a smile despite feeling as though I was dying on the inside. I am not embarrassed of my illnesses and I aim to spread awareness by sharing my experiences. However, that does not mean having a disability is any easier to accept.
The reality is, I have a compromised way of life and sometimes, I will be limited in what my body allows me to do. It is extremely frustrating to be young, vibrant, and goal-oriented yet trapped in a body that constantly fights against you. Many do not realize the emotional toll these limitations can take on the sufferer. According to the National Kidney Foundation, “work, sexual activity and normal social functioning can become difficult or impossible.” As a result, the suicide rate amongst IC patients is 3-4 times greater than the average suicide rate.
In addition to emotional hardship that escalates to depression and helplessness, patients suffer with more than just chronic IC pain; IC is almost always accompanied by other disorders of the pelvic floor. I have developed Irritable Bowel Syndrome, Pelvic Floor Dysfunction, and urinary retention together with IC. Moreover, these conditions tend to flare simultaneously. Similar to IC, there is no cure for any of these illnesses. Imagine not being able to carry out very basic bodily functions or share intimacy with your partner.
This is the reality for millions of women (and men), many of whom are in their late teens or early 20s. At a time when your friends and peers are in prime health, your body has taken away the ability to perform simple, biological functions that others do not think twice about. Unless you suffer from these disorders, you cannot possibly fathom the emotional havoc these limitations can wreak on your self-esteem and mental health.
Interstitial Cystitis is too often overlooked and misunderstood. People fail to acknowledge the seriousness of the disease as it is entirely invisible. Several times in my life I have felt dismissed by others solely because they cannot physically see my symptoms. If a student comes to class late but wobbles through the door on crutches, the professor will make an exception. Yet when I come late with tears in my eyes over a debilitating flare, my professor will not consider it a valid reason and mark me late, even after I have met with them to discuss my disability!
Unfortunately, this situation is extremely common. At the time of diagnosis, I was marked absent in every class during surgery recovery despite meeting with my professors in advance and providing a surgeon’s note. How could an individual possibly feel supported and understood when the severity of their condition is constantly dismissed? Not just by professors, but often times by “friends” and family as well.
So why am I telling you this? Why am I so adamant about spreading awareness? Well, I believe this disease has afflicted me for a reason. It is my hope that by sharing this with you, you will make an effort to understand the seriousness of invisible illness. Millions of people are suffering with pelvic disorders, physically and emotionally. Many are embarrassed and even ashamed of their condition. I am giving those people a voice.
My Lotus tattoo serves as a reminder to fight on each and every day. Lotus flowers sprout and grow through thick layers of mud. Though you would expect them to die given the circumstances, they break through oppression and sprout into a beautiful flower. The center lotus represents my battle with IC (hence why the flower is turquoise, the awareness color of Interstitial Cystitis). IC may oppress me, but it will never win. Take a good look at my scar, I wear it proudly. I may be “disabled” but that does not stop me from fighting. My chronic pain and illnesses are a part of me, but they do not define me. I refuse to surrender to my disability. Like a Lotus, I grow stronger each and every day.