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I have recently been more open about my diagnosis of EDS and have been talking about it with more people. Not that I was ever trying to hide it, but I personally have been more educated on it and am learning more all the time. This makes it much easier to have those conversations. One question that I have been getting frequently is some variation on “How do you cope with the losses that your chronic illness brings?” I find this to be a surprising and strange question. I’ve also struggled to answer it. But here goes!

Loss is a normal part of life. It doesn’t matter if you have chronic illness or not. People you love will drift out of your life, not love you back, die or move away. As you age, you will loose the ability to do things the way that you once did. You won’t run as fast or be able to lift as much weight. You will have to slow down your pace. Our bodies change over time. That’s just a normal part of being human. I don’t think that having EDS makes me any different in this area than anyone else.

There have been people who believed that I was somatic whom I was not able to reconcile with and we’ve drifted apart. But I’ve also lost friendships for many other reasons. My body has changed with time and there are many things that I can no longer do that I once could. Just like everyone else, there is a grieving process that goes with these losses.

But I think that the key to all of it is allowing yourself to grieve. I’m not sure why, but we seem to hesitate to give ourselves permission to grieve when we have lost something dear to us. When I found out that I have osteoarthritis in my feet with significant bone changes, I knew the implications. I allowed myself grief. I had to let go of the self I imagined that I would be in the future. Once I had done that, I was able to envision a different future. My plans have changed, but I’m still excited for things to come. Not what I previously expected, but that’s how life is. We constantly rewrite our world view and reimagine who we will be tomorrow. It’s just that some events in our lives are dramatic and bring our attention to this process while most things in life are more subtle.

This is not something exclusive to those of us with chronic illness. This is an essential part of being human. So I am not sure why people seem to think that I somehow suffer losses more than other people. I don’t. My losses are different than those who do not have EDS, but they are not more or greater. I believe that every human must learn to grieve and edit their self image. We must learn to accept that all things are temporary in nature; everything passes. Thus it is essential to enjoy what we have now because we never know how long it will be here.

So, how do I cope with my losses? I allow myself to grieve. I embrace “now” as much as I am able. I lean on those around me for support when I feel burdened. I celebrate the beauty and joy in the world. I throw myself into living with intensity. I practice gratitude. I nurture my generosity. I do my best to take care of this strange and quirky zebra body I was born with!

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