Friday, 17 February 2012



Elizabeth Kubler-Ross' five stages of grieving, from her book 'On Death and Dying'. Originally, these five stages were applied to those with terminal illness, or those grieving the loss of a loved one. I think that they can also be applied to those of us with chronic illnesses, whether life-limiting or not.

I am 30 years old, soon to be 31. I have been ill for longer than I can remember. Over the years, I have suffered losses as a result of my illness: my hearing; my ability to run, and then to walk; the career that I always thought was my destiny; friends; independence. I could go on, but I'm sure you get the idea.

These little losses can build up until life seems utterly hopeless. Grieving for these losses can cause losses too. I mourned my joie de vivre as much as the loss of my long-awaited career. Thankfully, my love for life returned, and I found other interests to occupy my time. This, I suppose, is acceptance.

If I were to reshape the stages of grief, I would make them into the shape of a spider web. Not only because there's a large spider on the other side of the room, but because I have so often bounced from one to the other in no apparent order. Having reached the glorious state of acceptance, I sometimes find myself ricocheting into anger, denial, depression, bargaining and back, all within the space of a few days. Sometimes even within the space of a few hours.

Acceptance for me has been about valuing the things that I can still do. When that has seemed next to nothing, I have tried to take up new hobbies. I re-learnt to knit when I was housebound for six months, and this has proved immensely satisfying. Not only does it occupy many lonely hours, but I have something beautiful to show at the end of it. Something that I have made, without walking, without lifting, despite pain. I am reaching a point where I can't knit for long without dislocating my fingers and wrists, but feel peaceful about this. I have been here before, and I will still be me, despite everything that my body throws at me.

Acceptance has also been about defining myself according to who I am, rather than what I do. I am no longer a medic, a scientist or an investment banker; no longer a GB waterskier, a swimmer or a wheelchair-skills tutor. On good days I can still be sociable, bake, read and knit. On bad days I sleep, vomit, nebulise and take medications. Despite all of this, I am still me. I am kind, enthusiastic, deeply interested in the world around me, hopeful, optimistic, grateful, generous, and sarcastic.This 'me' may live in a decrepit and failing body, but it is little different for that. I look after this body as best I can and hope that it will continue to support me for many years to come.

Despite the state of my body, I am glad to be alive.


  1. I really enjoyed this post. "Acceptance has also been about defining myself according to who I am, rather than what I do"-exactly! I think that is one of the hardest parts of living with chronic illness, especially when symptoms are worse and expectations for what we should be able to are even tougher to live up to...

  2. Hi Jo!
    I, too, am glad that you are alive and hope that your body will continue to support you for many years to come! I pray daily for you and Richard and also for the researchers and doctors who are searching for ways to help people with EDS and Mitochondrial disease and the myriad associated issues.

    Your thoughts on the stages of grief seem right on where you are concerned. I am fascinated by how well you know yourself (at such a (relatively) young age) and so impressed by how well you express yourself. Perhaps your true calling is writing! You have an incredible way with words! That is how I “found” you in the first place… by what you wrote on Ryan’s site. As soon as I read what you had written I was hooked! Your personality shown through and I wanted to know you better. We are who we are inside not what we can do physically.

    You are indeed still you and I love all the things about you that you listed in your description…and some you didn’t. I particularly love your honesty. Your honesty in looking inward…and your honesty in sharing what you find. Your suggestions for those facing chronic health issues are very helpful. Even a (relatively) old person like me can (and does) learn from what you share.

    You didn’t mention your sense of humor …or humour as you would write it!) ;-) A sense of humor is difficult to maintain when one is hurting and dealing with loss. But it comes though in your writings on many occasions.

    I so wish your blog had an update notification like CB does! I have made a mental note to check your blog before I open Facebook every day!

    I pray that every day is a good day for you. Unrealistic I suppose. No one always has good days. But I can hope and pray for that nonetheless! Sending you a tsunami of positive energy!

    Love to you and the lovely Richard!