To Those Who Wonder Why I Bother Trying If I'm Really So Sick

As someone who is chronically ill with a multitude of illnesses, I get asked sometimes why I even bother trying. To give you some context, between doctors’ appointments, infusions, surgeries, and hospital stays, I’m a full-time speech-language pathologist (SLP) student and hold down a part-time job at a preschool. Classes just started up again and I was appalled when a professor asked me why I was even trying, if I really was so sick.

Usually, I get this question from other students or other peers. I expect some amount of ignorance, but professors usually do not ask me why. I have several answers to his question and others who wonder why I try:

1. If I focus on being sick all the time, then the illness doesn’t just rob me of my physical health, it robs me of my mental and emotional well-being just as much. School and work keep me sane. If I didn’t have something to distract me from being sick, then being sick would become all-consuming.

2. Sure I may be sick, but it is not what I want my life to be defined by. I recently heard one of my fellow students describing me to a younger student as the “one who’s always sick.” That is not what I want people to identify me as. Being sick is just one very small aspect of what I am, but it is not who I am. My best friend told me she describes me as the strongest and most empathetic person she knows. I would much rather be defined by things other than my illness.

3. Goals give me something to look forward to. I look forward to graduating in December, a goal I have had for the last year. By focusing on that goal instead of the surgery I have coming up, I have less anxiety. Looking towards the future as optimistically as possible makes some of the medical things less intimidating. Instead of being scared about a procedure, I try to look at it as something that will help me stay healthy enough to reach my goal.

4. My life needs to have more meaning than just being sick all the time. I believe that the obstacles in our lives are there to make us better people. My cancer has made me more empathetic towards people I may work with as a future SLP, since the surgery from the cancer paralyzed one of my vocal cords and I lost my ability to talk for a while. My Ehlers-Danlos syndrome has taught me that I can handle just about anything. The pain and procedures I have been through, without terrible complaint, have astounded my doctors and other providers.

I hope this helps my professor understand why I try, because I have to, otherwise I am only defined by my illness. Instead of asking me why, ask me why not. I am just as capable as anyone else, despite my illness. No matter how many times you ask me why, or doubt me, I refuse to give up. As long as people understand that, then we are good.

Find this story helpful? Share it with someone you care about.

Related to Ehlers-Danlos Syndrome

Girl watching the stars.

When It Finally Hit Me That My Condition Has No Cure

When I first began my journey with my Ehlers-Danlos syndrome (EDS) diagnosis, I had read that it is an incurable, life-altering, lifelong illness that could end my life. But because of the whirlwind of emotions in finally finding the answer and diagnosis, and waiting for the appointment with the genetics team, it didn’t exactly “click” at first. I was wrapped [...]
The shadow of a man walking

When Fear Overshadowed My Relief Over Receiving the Correct Diagnosis

Fear doesn’t discriminate. A function of fear is to let you know when you aren’t safe. Fear is a protector, but fear can also be debilitating. This kind of fear makes your head spin as though you are on an endless merry-go-round, constricts your body, and shuts you out of the world. Fear is unfortunately a familiar friend. It first [...]
two women holding hands and walking in park

The Brave Love of the Woman Who Chose Me, Disease and All

I have Ehlers-Danlos syndrome. I also have in my life a woman who loves me — all of my pieces, together and apart (and they are so often apart). Who loves me when my joints slip in and out of place like the breath-holding, heart-pounding moment when cupped hands become laced fingers. Who loves me [...]
young woman standing on top of a mountain

To My Parents After I Was Recently Diagnosed With a Chronic Illness

I know it’s hard for you to see the child you’ve cared for facing challenges and to know there’s not much — if anything — you can do to help. I know you believe you’re doing all you can to make my new way of life just a little bit easier. I appreciate the early-morning [...]