the gap disability chronic illness

The Gap

I wanted to talk a bit about The Gap. The Gap between what I want to do and what I am able to do and how I am learning about it all the time.

When you have a chronic illness, there is this gap, a space between what you are physically able to do and what you wish you could. And it isn’t something that is often talked about. I suppose because it is such a sore point, it feels hard to admit when you can’t manage to do the things that others can.

For a lot of people there are coping mechanisms, changes in routine that allow them to do a lot of what they want, for others there are definite barriers and limitations and this isn’t easy to accept.

I can only speak about my own personal experience and how my journey is always evolving. I’m currently in the process of trauma focussed CBT and I am looking inwards and figuring out a lot of stuff. About what I want and what I can and cannot do and going through acceptance for some and coping strategies for others.

I have been talking to my therapist and Timm about my frustrations of how I wished my life looked and what it currently does, and this led me to think about The Gap.

There are things I probably won’t be able to do, in my personal circumstances, I have hernias that are currently inoperable. I am in pain almost constantly and physically my body isn’t able to do certain things. I can’t lift anything too heavy, I will probably never be able to surf in Hawaii, or hike through the Burmese Jungle. I probably won’t be able to run a marathon, do the Sheffield Round walk or dance all night in a club. (Just to stress that this is my situation, there are people with stomas who do all these things!) I can learn to accept these things. It’s ok! Also who knows what will change in the future with medical advances, but right now I cannot do very physical activities. This is my Gap.

Sam Cleasby is a Sheffield blogger, she stands with arms folded in front of a brick wall. She has pink hair, a jewelled headband and a floral dress

But you know, there are other things that sit in The Gap that are more mundane. I wish I could just feel the same physically every day. I wish I could know that I was able to wake each morning and not be fatigued, not be in pain, not feel filled with anxiety. I wish I could plan each week and know that I am able to work on Friday in the same way that I work on a Monday. I wish I could get up every morning and go for a swim, head to work, come home and cook a meal and hang out with my kids or friends, then plan a fun filled weekend of walking the dog, meeting mates in the pub, going shopping or just getting household chores done. And right now, I can’t do this. This is The Gap that I find so difficult to accept.

When I look at life like this, it feels awful and hopeless and it is easy to get stuck in that bad place, to wonder how life went so awry from the life you had planned. But I have always been the sort of person who tries to find the silver lining. I am also incredibly stubborn. Ok, so this isn’t the sort of life I expected, there are lots of parts that are very tough. As I talked to Timm earlier, he said something pretty wise.

“We all just live the best life we can. Some days, that’s going to mean our best life is sitting in our pants watching TV because you’re in pain. Sometimes it means we will hang out in the garden because you aren’t able to go out. Sometimes it means having a pint in the hot tub rather than in a pub. But these are all good things!

We are taught we should be living wild, crazy lives but we just need to do what we can to make us happy.”

Life is a learning journey, of figuring out ways to make your wishes a reality, accepting that some things won’t be as simple to achieve but finding coping strategies to make things work for you in your own way, adapting and reacting to changes in our lives and making yourself happy.

There are things that I difficult but I still manage to do them in my own way. I am a student! I went to university at the age of 39 and have just finished my first year of a Fine Art degree. That is something lots of people couldn’t do even in full health! I work running our photography business with my husband Timm, yes I need to work in a different way, I am not full time and I have to be flexible in my working hours. I run this blog, I started one of the very first UK based ostomy blogs, that is pretty special even if I do say so myself. I have done talks about disability all over the world and I am incredibly proud to have been able to help offer support to people all over the world.

Sam Cleasby Sheffield disability blogger

More than any of these things though, I am a kind person. I am loving and loyal, I am a great mum, I am the best wife to Timm. And I am a good friend. I am so amazingly lucky to have a fabulous husband and children and the best friends anyone could hope for. I have a lovely home in a nice place where I can walk my dog in woodland and a park at the end of my road. I have a good life.

I suppose my point is that we all have a gap between what we want and what we have, what we wish we could do and what we can do. And it is easy to dwell on that, but that ease doesn’t lead to happiness. What makes me happy is to think about the beautiful parts of my life and enjoying them. I know I will live with The Gap, but I will live the best life I can with it.

Peace and Love

Sam xx

5 replies
  1. Laura
    Laura says:

    Sam sending you light and love. You are an amazing lady and you’ve helped me many times through your videos and blogs. I’m waiting to see about my next surgery. I’ve only been ill for 4 years and yes it’s so hard not knowing what you can do from day to day. Not being able to make plans. Like you say if a good days being in your pants then ‘go for it ‘ or a drink in the hot tub.

  2. Pamela G. Conley
    Pamela G. Conley says:

    Thank you Sam. I needed to hear this. I find myself constantly asking “why?” Why did this happen to me?? What caused it and why do the doctors keep telling me they do not know why my lower bowel died and why 7 months after the first surgery, why it strictured and caused me to have to have it rebuilt. The last 4 years has been a struggle for me. I broke my foot, lost my bowel, my son died, my dad died, I tore my rotator cuff in a fall on the ice, had my hand operated on to remove a deteriorating bone at the base of my thumb, had C5-C6 vertabrey replaced in my neck, divorced my spouse which removed me from an abusive relationship, moved into my own apartment, retired from my job, tore my meniscus in my right leg, got myself completely debt free and purchased my own home. Some of the things were good and empowering but most were health related and loss related. I am still looking at surgical repair of my right shoulder tear and right leg repair. For that, I will have to pick my battles as to which one I do first. Your words were a comfort to me in that I need to be grateful for what I can do and not dwell on what I cannot do. Again, thank you!

  3. Angela Turner
    Angela Turner says:

    Great article Sam, and I agree that everyone has a “gap” between their expectations and their actual, physical life. But have you considered that the reason you’re a fab mother, best wife, kind friend, amazing blogger, and so on, is largely due to the tough – and very physical – experiences you’ve had to endure in your life? I truly believe we are the culmination of what life has thrown at us. I know that my chronic illnesses have forced me take stock and evaluate what is important to me, what my priorities are. Otherwise I might have been bumbling through my life completely unaware of those priorities. Chronic illness has taught me to be thankful for what I have but still push myself, where possible, to aspire to greater things. Well done for getting your first Uni year under your (hernia) belt in spite of the incredibly tough year you’ve had. You.are.amazing. x x

  4. Judith Hunt
    Judith Hunt says:

    I loved Timm’s words – they are gold.
    Bury you doubts and pain deep in the Gap….
    And continue being the best at what you are good at….


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