To My Friends Who Stick Up for My Chronic Illnesses
As a 21-year old attempting to be a social butterfly even with chronic illnesses, friendships have been the sustaining factor in my sanity. These extraordinary friendships look past my imperfections, seeing me as any other normal 20-something. When I am with you, I forget how different we actually are since I’m living with invisible illnesses: Ehlers-Danlos syndrome, Sjogrens syndrome and gastroparesis. Without the encouragement and unconditional love, I would not be where I am today (I’d probably be a hermit).
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
Thank you for suggesting we take the elevator or drive without me having to say I can’t do the stairs or walk. I think it is automatic for you at this point, but internally, I am beaming with love and gratefulness that you are ever-conscious of my pains and weaknesses. You know I would try slowly to go up the stairs and not complain, but only you can see through the fake smile.
Thank you for always ensuring I have my medical alert bracelet on my wrist and even going to get it fixed with me when it breaks. It is unbelievably comforting to know that even when you’re not around to be my “medical advocate,” you care that I have another option to alert strangers.
Thank you for reminding me I am always beautiful and whole and repeating that to others who see me differently. Even though I have a feeding tube, a giant midline scar and a gastric pacemaker, I deserve people to treat me with the utmost respect and not see me as a burden or damaged. It’s not something I discuss with you often, but you have given me confidence and self-esteem when I lost myself in my pain.
Thank you for telling off any stranger who has stared or questioned my scars and disabilities. My favorite story comes from a cab ride after someone elbowed me in my pacemaker by accident. Obviously, my abdomen was in pain and I was extremely nauseous, which I mentioned to you in the car. Well, the cab driver pulled over in a random neighborhood and told us we had to get out because I was sick. But you wouldn’t have him treating me with “discrimination,” as you said, so you called the police. Even though we still ended up on the side of the street without a ride, you and I laughed about the circumstance for weeks.
That is what makes a friendship special: accepting each other for who we are – me as a different, disabled girl and you standing by me when the world throws curve balls.
I have the greatest support system right there to defend me and be by my side when I don’t have the guts or strength, so massive thanks to my girls out there. With that, I want to apologize. I can’t imagine what it’s like seeing me constantly throwing up, in pain, in the hospital and struggling daily. I do not think I could ever handle watching any of you suffer without feeling extreme emotional pain and distress, and it is painful to think about.
Just know that without you, I wouldn’t be the fighter I am today, and I won’t allow you to lose me without an enormous fight. You are all my blessings.
Fallon O’Reilly, who is almost 22, had to medically withdraw from medical school this year because of complications with a rare connective tissue disorder called Ehlers-Danlos syndrome. She has been diagnosed with Sjogren’s syndrome and a plethora of other autoimmune disorders, along with complete paralysis of her GI system. With severe gastroparesis, she feeds through a feeding tube. She has had four abdominal surgeries in nine months and had an experimental surgery to place a gastric pacemaker.
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