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The Battle Between New Friends, Ehlers-Danlos Syndrome and Guilt

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Friendship is a topic that always seems to give me heart palpitations! The chronic pain and tiredness that comes with Ehlers-Danlos syndrome leads to a constant battle in terms of friendship and the guilt I feel.

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

To start, it isn’t all bad! Making friends for me is the easy part. When you start a friendship I am normally in a setting I feel comfortable. For me, sitting either at work, at the pub, a coffee shop, or on the sidelines at a sports event. If I was having a flare-up I would be at home, so I am normally showing the best version of me at this point.

You start normally by discussing mutual things you have in common. Through spending most of my life in pain/not sleeping in front of the TV or a computer, I have a lot of knowledge on a lot of random subjects, which means I can talk to people about almost anything (like comics, films, books, places, animals).
This makes me feel great. I feel a bond and connection and think I have met this person, they are great I can’t wait to see them again.


I have a condition that, although sometimes I can go without noticing it, means that at a moment’s notice I could have unbearable pain, can’t sleep and can’t drive through dislocations. As soon as I manage one aspect, a new issue arises.
I will have found this new friend, this great person and after I have met them a few times I have a flare and I have lost them. Even if I do not lose them, the guilt of holding a friend is sometimes to much for me.

  • I will arrange to go out for dinner and be falling asleep by the time the starters come.
  • I will arrange a night out and be in too much pain by pre drinks
  • I will make it out on a night out and spend the evening sat in the smoking area. I don’t smoke, I just need an excuse to sit the evening away.
  • I will go out for an event, I will talk about myself, anything to forget the pain and when someone tries to talk back I can hardly understand their words through the pain.
  • I will talk to people through dislocations and seem fake and disinterested.
  • I will plan events, even persuade people to spend time with me who are very busy but then cancel because I cannot get back up once I have sat down.

You can have the greatest friends, and as soon as the condition worsens you may cancel on them more times than you see them.


Guilt is the main word I associate with friendship. It is what causes the heart palpitations, what makes me read every possible article I can that discusses chronic pain and friendship.

In terms of friends outside of my family, the guilt is always there. It is something I think about all the time. I can be out with my partner, I can be well enough to walk the dog or clean the house and I feel guilt. Guilt I am choosing these everyday tasks, that most people wouldn’t class as “exerting energy.” I am choosing to clean my house when I should be using this energy to keep in touch with friends. Sometimes I will choose friends and I will have a messy house, an unwalked dog, an unfinished essay from my course. I will leave everything to try to be normal and prove that I care.

The guilt isn’t just about seeing people. I can know someone close to me is having a hard time and they can tell me they are hurting and I can forget – not even forget, just be in pain and be trying so hard to get through the day that I cannot think of anyone. I don’t mean to be selfish but I literally cannot think of anything but not crying and getting one foot in front of the other. I have had days when I get home and realize that someone needed me and I wasn’t there, and felt the guilt of messaging someone after hours or even days when they have asked to talk, and I reply too late.

This year my resolution is to be strong and not let my guilt take over my life.

I have lost more friends that I can count, through canceling plans, not replying to messages in time, not noticing other people who have issues and were crying out for my help. I need to realize that putting my health first does not necessarily require depression/sadness.

The Mighty has helped me so much with this. The strength so many of you have has showed me that I cannot wallow in the loss of friendships and the guilt associated!

Anyone facing these same issues, please remember you are strong just by getting through a day in pain! Do not be like me — don’t let guilt take over your life. Know you are not alone, I am here and I am feeling the same as you.

Lead photo by Thinkstock Images

Originally published: January 10, 2017
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