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What It Felt Like When My Brother Became Mysteriously Ill, Too

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I have always been the “sick one” in my family. From as early as I can remember I have always had some sort of health problem, which I later found out was due to Ehlers-Danlos syndrome and the plethora of other related syndromes and conditions that often accompany it. At age 27, I have become accustomed to being known as the sick one, being the one everyone always has to take care of. A few months ago this changed when my brother began having some major health issues. Suddenly I wasn’t the only “sick one” in the family, and it seemed as though instantly I had someone join my sad and lonely club.

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

I can say without a doubt in my mind that my brother is my best friend, though it wasn’t always this way. He is four years older than me, so when we were younger my role in his life was “annoying little sister.” I have always looked up to him — he always seemed so strong and confident. He has always been way more outgoing than me. I always aspired to be like him, and in a way I have forever lived in his shadow. He has always been more successful than me, he got to finish college and even travel to New Zealand for one of his semesters. I barely finished one full year of college (and it took me three years total to achieve this). He has a steady job while I cannot work, again due to EDS. While I certainly envied his life, because it is a reflection of all the potential I have if only my health issues didn’t get in my way, I never once begrudged him any of the things he has achieved and done with his life. He works very hard for what he has, and I have always respected this about him.

My brother has always been a huge support to me during all my health problems. He always visits me in the hospital, and when I am having a bad day due to pain or other symptoms, he buys me presents just to cheer me up. He is always making me laugh and keeping my spirits up even when I am feeling extremely low. I have always felt so blessed to have him in my life, especially during the really hard times. It came as quite a surprise to everyone when my brother started having health problems of his own. Suddenly the strong, confident, outgoing person I have always known was brought down by illness and though he is going through a different set of health problems, he is facing the exact same battles that I had to fight over 10 years ago. Looking at him, hearing his problems and concerns, is like seeing the scared, worried 14-year-old girl I was in the past. Normally people would obviously be concerned by having someone they love fall ill, but it hit me harder because I know exactly what he is feeling, I have been there.

I am so used to being the one actually going through the health problems, the one going to the doctors and the hospitals, the one having to have bloodwork, MRIs and every other test imaginable, that I never really stopped to think about how it feels to be on the other side. I have suddenly become aware of the intense
worry that comes with loving someone going through a mysterious illness. It is a worry like nothing else. Tt is excruciating to want to do something, anything to help, but not being able to. It is so hard to just sit back and watch these things happen to someone who was always so relatively healthy. I have come to the conclusion that as horrible as Ehlers-Danlos (and all my other health issues) is, I personally would much rather be the one who is sick, the one having all the tests and doctor’s appointments, than being a family member who feels virtually useless.

heather and her brother

Although I do feel useless, as if there is nothing I can do to help, I realize that I am wrong about this. I have always had the perfect role model for the situation I am in, my brother. He has always been there for me, so that is what I will do for him. I will make him laugh when he is feeling down, I will listen to his concerns and I will do little things to lift his spirits, just like he has always done for me. Most of all, I will be here to empathize with him and to assure him that although he may be going through tough times at the moment, that doesn’t mean that his entire life will be bleak. In this regard I am the perfect role model for him; I am proof that you can have a good life, a happy life full of laughter and love, despite the terrible health issues you may be going through.

Originally published: August 4, 2018
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