How I'm Learning to Balance Being Honest With Protecting My Family From My Pain

Being chronically ill is difficult for a lot of reasons. You go to bed exhausted and you wake up tired. You can’t eat the same things as most other people. You have to be careful how you move. You have to plan everything you do very carefully. It all adds complexity to your life, but for me there is one thing that is the hardest of all – balancing honesty about how I am feeling with trying to protect my family from my pain.

• What is Ehlers-Danlos Syndrome?
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It may sound strange, but for me the hardest part of my illness is interacting with the people I love. Not because they wouldn’t understand, not at all. But because I know my pain is their pain.

 

Everything I say to my family about my life with illness goes through a subconscious filter. I unconsciously edit my vocabulary and my tone and my appearance to make myself sound and seem much better off than I really am. I know I do it, but I cannot prevent myself from doing it.

My family knows I do it, but deep down I think they may be relieved that I do. My life is very complicated and there’s not much of it that doesn’t carry with it agonizing stories of my body going wrong, things you would never want to hear your daughter or your baby sister telling you about. But, there is one family member I cannot hide from: my older brother, Luciano.

He lives across the hall from me at University and he is the only family member who is there during all of my worst days. He has answered the phone at 2:00 a.m. to me reporting that my medication wasn’t working and he comes to sit with me until I fall asleep. He gets calls to come and get me because I cannot walk all the way home due to a sudden injury or dizziness. And more times than I would like to admit, he and his girlfriend have stood with me in their arms as I bawl my eyes out about how much pain I am in and how “sick of being sick” I am feeling. It’s my only truly honest relationship, because it doesn’t matter what I say, if I am bawling, it is obviously overwhelming.

I have many other family members but I struggle to be so open with them. I want to shield them from my worst, because I know there is absolutely nothing they can do to help. It’s not their fault, it’s not anyone’s fault. But it causes me emotional pain to think of my mom, listening on the other end of the phone to my tears or my describing how I’m feeling. It’s an emotional pain that is harder to bear than any physical pain I have ever felt. And I feel a lot of pain. I purposefully avoid phone calls and check-ins when I’m particularly bad. I report in later on, when I can downplay the situation a little bit. But I am working on it. I am trying desperately to be more honest about how I am feeling with everyone I speak to. It is the only way to ensure I get the help I need.

I am completely honest with my brother, now I need to work on it with my other brother and my mom. Then maybe I’ll be able to get to it with my extended family and then maybe even my friends. Many know the jist of my situation, but no one knows the full reality – because they can’t. But honesty is the first step to getting people to understand, and part of that requires swallowing the pain, the shame and the guilt. And that’s where I will start.