Friday, 15 April 2016

Coming to terms with illness and disability: a process of grief

I'm delighted to have a guest post on the blog today from my friend Erica Kimber. She's suffering with problems that cause ongoing debilitating pain, and has kindly agreed to share some of her thoughts on the experience.

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It's been 3 years since my health started getting really bad and it's continued to get worse over the past 3 years. I'm struggling to deal with what is happening to me. It doesn't help that my health has been getting worse and that my conditions are variable so I’m having to deal with different things on different days. I don't know how to find an acceptance of what is happening to me. And I know I need to do this if I am going to really live with these conditions. It’s one thing to find and buy the items I need to live, mobility scooters, travel type cups etc., but it's another to accept that I have to use them. It’s one thing to accept the pain as a way to deal with it, to reduce it, it’s another thing to accept that I’m going to be in pain and on powerful drugs for the rest of my life. It’s one thing to face extreme verbal abuse as it happens with equanimity, it’s another thing to be composed later thinking about all the verbal abuse I have received. So how do I learn this acceptance? I have no idea.

I need to be able to grieve for what I have lost; for the me I used to be, for the things I used to be able to do, for the things I will never be able to do again. It is difficult to find the space to do that. People who don't have my conditions (or other similar ones) don't want me to focus on what I have lost, on what they see as the negative side, they want me to focus on what I have, on what I can still do. Much to my surprise virtually all the people with similar conditions that I have talked to also don't want me to talk about what I (and they) have lost. They don't want to think about that side of their illnesses, they too want to focus on the positive, on what they have and can do. Now I'm not saying that there is anything wrong with being positive; in fact there is a great deal right with being positive and I need to be more positive, but I also need to grieve. I have lost part of my life and I need to grieve for what I have lost before I can have any hope of being positive, before I can reach any level of acceptance. So how do I find the space to grieve, how do I move on from just being angry? I have no idea about that either.


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Many thanks to Erica for sharing her thoughts. Have you been through a similar process? We'd love to hear from you.