“Oh, I don’t know how you cope!” (sad face)

I get this from time to time, the sad face, head tilted to one side, sometimes there are actually tears in the eyes.  The look of full on pity, perhaps a hint of ‘thank fuck it’s not me’ mixed with horror. 

“Ohhhh, I do t know how you cope!” 

I cope because I have no other choice.  I actually hate the word ‘cope’. It’s nonsense isn’t it?! Coping simply means getting through each day, each hour, each minute.  There’s no opt out in life (well, there is but let’s not go there), you can’t choose to not be ill one day, you can’t pop off your stoma and reattach your arsehole.  So asking me how I cope sometimes feels like you’re asking how I am still alive.  How I’ve chosen to live even with this disability. 

Perhaps I’m being over sensitive, but sometimes I can’t fucking stand the sad looks I get, the pity, the tilted headed frown.  

When I talk on here, in public, on social media, it’s not because I want your sympathy. I just want you to understand a little more. I don’t want to feel like you are appalled by the realities of my illness, I just want you to know what they are. 

I had a big leak recently and someone saw what had happened and the aftermath. They said with utter horror and sadness “ohhhh Sam, it’s just awful!!! I don’t know how you can live with this! How do you cope?! I couldn’t do this!”

I don’t think they meant to be hurtful, I don’t think they realised that their words hurt me far more than the blockage that had caused my bag to block up and push away from my skin.  


Perhaps I’m being unfair in expecting understanding without sympathy, care without pity.  After all it’s hard enough to understand my own feelings let alone expect others to know how I need them to react. 

Just remember for the future though that I really don’t want you to feel sorry for me.  We can talk about it, we can say that it’s shit (with every pun intended!), we can discuss how it’s sometimes really, really fucking hard to have a chronic illness and a disability. 

Take my lead, if I’m crying then please care for me and give me a hug. But if I’m just dealing with my usual day to day life, be aware that your pity can make me feel like I’m a second class citizen, it makes me question your thoughts on me and my life.  Your tilted head sad face may be well meaning but feels patronising as hell. 

✌️ & ❤️ 

Sam XX 

4 replies
  1. Margit
    Margit says:

    I one hundred percent agree with you !! I don’t cope, I deal !! you have no other choice like you said. Coping to me is like giving up. you deal with your situation you make the best of it, I still have residual problems from all the chemos and radiation and the surgeries and now my kidneys are failing. So now I’ve been told I have to have dialysis within the year. and now they want to put me on the donor’s list. Yes it is very very scary, it’s something I don’t want to go through & wish I never did have to. those are the cards I was dealt with play the hand. O well,,, you do it be done with it & go on. move on with your life. From the age 9 with bleeding ulcers & colitis I realized whatever my problem was there’s always worse, always. 😎 loving life watching my son grow and having my husband !!!

    Reply
  2. Angela Turner
    Angela Turner says:

    Been there with the looks of pity and sympathetic words that express no understanding just a “poor you” attitude. I was an IBD sufferer who refused to be victimised or become poor me, so much so that once I had had my surgery to remove my large intestine and met my new friend, Homer the Stoma, I set out to be as fit and healthy as I could be. I also try to educate people that living with a Stoma, having it leak occasionally is a minor inconvenience compared to the soul-destroying, gut-wrenching pain I was constantly in with ulcerative colitis. I have a good quality of life now and I believe there is always someone, somewhere who is worse off than me. I admire you Sam, you come across as a strong, fiesty woman who isn’t afraid to express herself. We need to keep on educating people and speaking out about the – still – taboo subject of poo in all its forms.

    Reply
  3. Gordon
    Gordon says:

    Well said Sam, you really do have a great way of putting things.Most of us just put up with the pitiful looks, to afraid to speak for fear of hurting others feelings. Ironic really, considering they are hurting ours with their pity.

    Reply

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