health adventure

Survivor’s Guilt

One of the things I’ve been struggling with lately has been the idea of remission. I’ll be writing more and more about it throughout the months to come I know.

The SJIA community has lost so many children this year. Unless this is your first time here (in which case welcome!), you likely know that I lost a dear friend back in December of 2012 as well.

I try to be logical about it all. I don’t believe in the idea that everything happens for a reason. I don’t believe in the idea that people have expiration dates. Part of that, I’m sure, is wanting to believe that I control my life and no one else does – something that is pretty common for survivors of abuse as well as chronically ill people.

This weekend, though, T and I were listening to music and this song came on.

It’s one of the songs that I have always liked. The lyrics resonate with me at times like these, even with the religious undertones.

I know so many people who all deserve to feel better – people who are running out of medication options or who are mostly bedbound from their illnesses. What is the reason that I’m doing so much better physically?

Does everything happen for a reason after all? Is this a way that I can work towards helping others better, rerouting energy lost to my illness before to advocacy?

But then I question if I’m good enough to do that. Will I be the type of person who easily just walks away, trying to live a normal life and only coming back when remission ends?

In any case, why me? Why is there a medication that works to help me but others haven’t found theirs yet? Why do I get to feel well when there are children I know who keep going in and out of the hospital?


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  1. I feel this way a lot. With Endometriosis I got cut such a lucky break. I was one of the few who had access to endo specialist, I am one of the few where my uterus was actually a part of the problem, and I am one of the few who didn't want to have children. I see so many women who are watching their life dreams get stolen from theme by this disease. Women who have had more organs removed than me and are still in agony. I still pay the piper for my history with endo daily. Though some nerve damage and a sluggish colon seems like a small price to pay.

    Though I still make time to go back. Even while dealing with other illnesses, which have also recently reached something approximating remission, I still go back. I also continue writing about the other things I deal with.

    I'm sure you and I are cut from similar cloth. I am obsessed with science and finding answers. Every day I couldn't type I read. As soon as I could type again I wrote about what I had read. We will have times where we need to and deserve to live our lives with remission. Though for some of us advocacy and sharing information is just in our DNA.

    I lost my kindred spirit in peer to peer professional support for mental illness to suicide. I live for her daily, and nearly a decade later my career still reflects our dreams. It isn't guilt, it is me wielding the spear for the two of us.

  2. I so appreciate you sharing this <3 It really helped me know that I wasn't alone – and to 'wield the spear' for myself, Laura, and the kiddos out there who have lost the battle.

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