I am in the middle of having therapy, it is trauma focussed CBT (Cognitive Behavioural Therapy) along side talking therapy. This is to help me with the feelings I have had around years of illness, surgeries and ongoing illness. Though I was nervous going into it, it has been hugely helpful to me. I wanted to talk a little about acceptance today.

In my head, accepting my illness felt like giving in, like losing hope and accepting that my life will always be a bit shit. But in working with my therapist, I am learning about how that warped view is holding me back. Acceptance to me now is about giving myself the freedom to let go of all the negative feelings and learning how to use coping strategies to live with chronic illness in a way that allows me to have the happiest life I can.

I am realising just how much guilt, shame and anger I have carried with me. Guilt in how my illness has effected my family and friends, shame of the imagined failure of my body and anger that I am not ‘normal’. And what I have learnt is how those feelings are holding me back and don’t have any positive outcome.

woman with NG tube and a bag of bile

I have been incredibly poorly for half my life now, starting with ulcerative colitis and leading to multiple surgeries to remove my large intestine, then my rectum and onto life with hernias that cause daily pain and struggle. My first surgery was in 2013 when I had my first ileostomy formed and my last surgery was in February 2020 where I had a lot of complications, including my kidneys shutting down and I nearly died.

Till my last surgery, I was always hopeful. But that hope was a dream of returning to a life with no illness or pain. And so after my last op failed yet again I was told that I had reached the limits of medical science, and that it was now a matter of managing my symptoms and achieving the best quality of life I could with pain and illness. As my doctor said this to me, I felt crushed. I felt that I had no hope any more and that I was being given a long, slow death sentence. I was reeling and didn’t know how I could possibly live like this.

That’s why I started therapy, to help me deal with these feelings of utter hopelessness.

And slowly but surely, it is working. I am letting go of the negativity and beginning to work on making my life the best it can be. I’m questioning myself when that mean spirited voice we all have in our head and telling it to shut up! It isn’t the big things so much, as the little ones.

Accepting that it is ok for me to get a taxi to work. Before I would force myself to get public transport because I refused to accept that I couldn’t do a ‘normal’ thing like getting the bus and then doing a full day at work. It’s almost like I was punishing myself. Now, I get the damn taxi if I need to! And I celebrate the fact that I am well enough that day to go to work.

I accept that I may not ever climb a mountain but that is OK. I may never run a marathon, or cycle for miles, or swim the channel. Before I would beat myself up about these things, so angry that my illness has robbed me of opportunities. But this anger has zero positive outcome, so why I am wasting my time and energy with it.

I can give up these ideas of things that most people in the world will never do and just revel in the things that I can do. I have a job I love, working with my husband. I have wonderful friends, fantastic kids and I am studying Fine Art at university at the age of 40! I have this blog that allows me to connect with people all over the world and offer support. I love to travel both abroad and in the UK in my camper van, I have visited some amazing places around the world. I have a nice home, I am safe and secure, I love and I am loved by some of the most brilliant humans in the world.

I was wasting so much effort worrying about the things that I cannot do that I lose sight of the life that I do have. And it is pretty bloody good.

I’m not 100% there, but every day I am learning acceptance.

I will probably always live in daily pain, have to take many medications every day and not be physically able to do everything that I want to do. But that’s ok because it is the life I have and my illness is just one part of that life.

I love and I am loved.

I think if we can say that, then whatever our other circumstances, we are pretty lucky.

Peace and love

Sam xx

4 replies
  1. Sarah
    Sarah says:

    I have followed your blog for many years, mainly because we both had our colostomy surgeries at the same time. I went on to decide to go for Jpouch surgery, whilst I know your journey was different. But in a lot of ways, I felt we followed a similar path. My jpouch surgery has left me with a rectovaginal fistula, which I’ve had a couple of unsuccessful surgeries for and now live with a seton. I’ve also got strictures which I’ve had numerous surgeries on, but like you, was told they had done all they could late last year and to live with the symptoms. It restricts my diet, I have to plan my whole life around it and it felt pretty hopeless when they said that. I also had to cope with a new extra intestinal symptom, scleritis, which put me back on the dreaded steroids. I think all of this, as well as lockdown, has come to a head. I’ve never really talked about how much shame I feel about my body, but the past few months have been really tough. I took the decision yesterday to start therapy. Your story has made me a little hopeful. I am really unsure if therapy is going to help but I need to do something as I can’t carry on as I am. I’m glad it is helping you, and please know that you’re an inspiration to a lot of people living with chronic illness so thank you for being so brave sharing your story.

    FRANK CUTULI says:

    Thanks Sam, i’m struggling with the acceptance thing right now, as i child my father thought he could cure my iincontience by locking me in the bathroom and verbally abusing me .
    I’m 53 years old and all my memories of my father are about his anger towards me.
    I have Spina Bifida and i have a urinary stoma .
    i often think of what life could have been without being born without a disability .

  3. Judith Hunt
    Judith Hunt says:

    I intend to read this post on the daily until I can get my motivation and acceptance to a place where you are now at….. I too am resentful of my position in life now I have reached the age of 63 and I know I should not continue to waste what years are remaining by constantly complaining about what has gone before. Good on you Sam…. I thank you in advance for what I hope will be for me a new outlook on life. 🙂

  4. Angela Turner
    Angela Turner says:

    Reading your words today has made my day full of sunshine (even though it’s pouring with rain!). It is so good to hear that you are on your journey to acceptance and learning to focus on your positives, leaving all the “can’t do’s” behind you. Welcome to your lovely life Sam, enjoy it in all its wonderful glory. With huge love & hugs from one chronic survivor to another ?


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