Getting Through the Nights When It Hits Me That My Illness Won't Get Better

I sit on the cold bathroom floor writing this. I am left with only my computer as I throw up repeatedly while listening to “Flares” by The Script. Tonight, right now, it is all real. My pain is real, my illness is real, the loneliness consumes me. I sit here without real means of communication, becoming lost in my thoughts and the music until I finally throw up again, further clearing my body of nutrition and pain medication. I wonder to myself if this is the celiac disease, too much sun, POTS, or something Ehlers-Danlos-syndrome-related. Whatever it is, it is not pretty. My tears are staining my dress as I lie here sobbing, and the only thing I know how to do is write (and throw up).

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

The truth is that in this moment I feel hopeless. This is as close to rock bottom as I tend to get these days, but trust me it is scary. In this moment the pain, the nausea, and the fatigue are all-consuming. I think I will never achieve the goals I set for myself years ago, I will never get better, I will never live a normal life. On these nights it hits me. It hits me that my situation will never change, and I will never get better. On these nights I become hopeless and alone.

At a certain point during my pity party, though, my attitude changes. I realize that I cannot control what is. I cannot stop my conditions from making me miserable. What I can change is what could be; I can change my future. I find realistic goals for my future, I find a good support system, and I keep pushing on as an advocate for my conditions. On these nights I realize that there is so much beauty in the world. I see it on the nights when I drive down the basically empty highway. I see it when my plane touched down in Mexico. I see it when my little brother hugs me and tells me he loves me. There may not be beauty in my current situation, but there will always be beauty around me, and I have learned to accept that.

I cannot change what illness is standing right in front of me, but I can take in the beauty surrounding me despite my situation. These moments are what get me through my bad nights.