No matter how I try to explain the difficulties of living with Crohns, no one understands!?

Posted , 5 users are following.

My sister was diagnosed with Crohns a few years ago so it was new to our family...this year I was diagnosed with it myself and tbh I don't know how she ever coped with us knowing nothing about it! I really wish I'd understood it better for her because now that's what I need more than anything !! Before I was diagnosed people honestly thought I was faking!!! Accusing me of skiving and being lazy etc, even people that are super close to me sad And that bothered me more than the disease itself because all I need is support, not sympathy...now that months have passed since my diagnosis, people seem to forget that I have a life long disease and expect me to be fine by now! I know I should shrug off any insensitivity but sometimes it really gets to me and I feel really depressed...anyone here experienced this??? Or any suggestions as to what i can do?

0 likes, 5 replies

Report

5 Replies

  • Posted

    Hi Jodie, I was diagnosed 20+ years ago and i still have more questions then answers. When I'm feeling very run down and feeling unwell I just want to either stay in bed our lie on the sofa my friends and family say thing like how can you be tired? Or your just lazy. It really does not help at all. Thanks Twiglet,

    Report Reply
  • Posted

    Hi Jodie I do understand, I have had Crohn’s for 12 years but only started to suffer with it 4 years into diagnosis, I had an op in 2013 and although I have been in remission since it left me with bile salts malabsorption which leaves me needing the loo far more than before the op. I have struggled to deal with the impact it has has on my everyday life, I think it is like any illness, you think you understand and sympathise but you don’t really know unless you have it. I used to have chronic depression/anxiety which stopped me doing anything for fear I would have a panic attack and I feel like I have returned to that scenario except I am now happy to go and do things but fear of needing the loo dominates everything. I usually say to well meaning friends that it’s like going out when you have gastro only it’s everyday. I try and get on with things as normal and try not to dwell on my limitations or moan to friends about it and if I’ve arranged an outing and can’t make it because I am not feeling comfortable then I just say my tummy is playing up and leave it at that. I know I am lucky because it could be so much worse, Crohn’s is different for everyone and it is easy for non-sufferers to gloss over a ‘tummy upset’. I had never heard of it when I was diagnosed but I hear of it all the time now. If your friends are interested they can google and read up on it, I try and educate my friends if they ask about it but if you don’t look sick it’s hard to make them understand. I have friends who need to be gluten free and I don’t really understand that but I do know they’d be terribly ill if they consumed it and it is a nuisance for them eating out and food shopping but like us it is for life so we deal with it. I am sorry you feel under-supported and sometimes people can be insensitive, especially when you are not in a flare up and can function normally. You have your sister and family who understand, it might take your friends a little longer to grasp the impact of this horrible disease, I wish you well.
    Report Reply
    • Posted

      Hello,

      Thank you for your reply I really appreciate you taking the time to help me out smile

      I have experienced everything you mentioned and it's just comforting to know there are people that can relate and fully understand me....

      Hopefully once I get on my next lot of treatment I will do loads better... in the mean time I suppose I will have to keep my chin up and ignore any unhelpful comments!!!

      I'm just a bit anxious bout what my next treatment will be! I was originally told I'd be getting azathioprine infusions but now they're not sure so does anyone know of other possible treatments options for after steroids???

      Thank you everyone for your kind responsessmile

      Report Reply
  • Posted

    Hi, sorry to hear your story and suffering.  I suppose I am lucky with my illness as both my Mother and Father suffered with it later in their lives and my young brother has suffered for many years and he is 55 now and I was diagnosed with it in 2011 when I was  56. The only person not to have it in my family is my older brother and he doesn't understand at all.  Needless to say my younger brother and I have nothing to do with him (there are other reasons as well but I will not go there).  I am fairly lucky to have a step daughter who is a nurse and many of my CLOSE friends have medical knowledge (because of their professions) and they fully understand.  Any friends who cannot get their heads around our illness are not friends and you would be better off without them as they are causing you stress which you don't want with this illness.  There are local groups that you could join to get to know people with the same problems and that helps an awful lot. Look at www.crohnsandcolitis.org.uk. There is alot of helpful advice and it will show you you are not alone in your suffering.  You may well get to know people from your local area with with the same problem.  They also have a presence on Facebook which is also very helpful.  Surround yourself with people who care about you and ditch the others, because they are not friends. !!  Good luck and hope you feel better soon.  

    Report Reply
  • Posted

    Hi Jodie as you're finding out your feeling of isolation is one that many of us share and have to deal with constantly. Crohn's and UC are not like other diseases and people can be ignorant and insensitive unless they have first hand knowledge of these conditions. Like many (lucky) people my flare ups can be separated by quite long periods of recession when I still suffer from fatigue and lack of focus/attention but free of the worst acute symptoms. At these times you have to be aware of discrimination but also understanding that by tomorrow you may be wracked in pain and bed or toilet bound. Good luck from Pete W

    Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up