Chronic illness and guilt – when we can, we do
I got a message from someone on twitter today from a mum who is facing stoma surgery.
“You have made a difference. You made me feel ok about stoma surgery, you help me to remember I’m not the only one feeling like this. These school holidays are breaking my heart, I feel so guilty for not doing things with the kids. Thank you for reminding me I’m not alone xx”
I responded telling them that today I’m in bed as all my kids are on computers and though I feel bad about this, I remind myself that when I can, I do.
It struck me that this is a good motto for anyone with chronic illness who is feeling guilty.
There is so much guilt in living with chronic illness or disability, it’s wrong, it’s unhelpful and it’s crap but almost everyone I speak to has had feelings of guilt at some time in their lives.
Guilt that they’re letting others down, that they’re not good enough parents, partners or friends. Guilt that they don’t pull their weight with work, guilt for taking time off. Guilt that their houses aren’t tidy enough, their dogs aren’t walked enough. Guilt that they sometimes eat fast food as they’re too tired to cook. Guilt that their kids have to care for them when they want to be caring for the kids. Guilt that family days out get cancelled or become about their illness rather than the fun of it.
Its easy for me to say that it needs to stop, that these things we feel bad about are out of our control and that guilt doesn’t help anyone. But I’d be a hypocrite. Because I feel all these things too.
But I do remind myself that when I can, I do.
When I can take my kids out for the day I do. Yes, it’s sometimes to the cinema as I know I’m not strong enough for a more physical day but I do.
When I can, I work hard, I put my everything into careers that I love.
When I can, my house is clean and tidy (and when I can’t, I hire a cleaner!!)
When I can, I see friends, I think about others, I’m there for them.
Life can be tough, but remember…
When we can, we do.
✌?& ❤️
Sam xx
I have been following you for some time and have found your blogs to be very helpful. I was diagnosed with moderate to severe UC about a year and a half ago and was able to find a good doctor who has helped to keep things under control….for the most part. On top of dealing with the UC, I also have to deal with degenerative disk disease and osteo-arthritis, spasming arteries, and a wife who is dealing with major depression and multiple sclerosis. On top of all that, I still have to work to support our family. Needless to say, I am exhausted all the time, coupled with being in constant pain in my back and neck ( which the doctors have said will need to be fused in multiple places to avoid the possibility of becoming paralyzed.
I just wanted to thank you for all of the advice in dealing with this portion of my physical problems. It has been more help than you will ever know.
Thanks again from the other side of the pond.
Bruce
Oregon, USA
I reed your blog all the time. I’m currently recovering from my 2nd operation this time last year I had a partial colectomy and iliostomy and just 2 weeks ago had the rest or my colon removed along with my rectum. I’m dreading having the stitches out of my bottom next week!… but most of all im finding it so hard at the moment with all the emotions feeling sorry for myself but most of all feeling guilty I have 2 kids who are also spending the school holidays on gadgets or in the garden having to entertain themselves luckily there old enough to understand being 14 and 10 but I still feel bad no family holiday, my house isn’t as clean and tidy as I’d like and it’s our busiest time at work and feel I’m letting them down too. The best way I can deal with it is by lots of meditation, talking to my kids and explaining it’s not gonna be forever and making plans for our future.
We just need to remember were doing the best job we can. My soon to be husband is alway telling me how strong and brave I am although I don’t always feel it sometimes it’s nice to hear it and maybe my illness had shown our kids that sometimes life isn’t perfect and things don’t always go to plan.
I love reading your blog stay positive and stay strong.
From sunny Burnley
Sheree xxx