Lack of understanding and support

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Patients Ulcerative colitis

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Topic of the discussion


Posted on

Hi all, I'd like to ask you how do you manage to deal with people's ignorance and lack of understandng? my family has a hard time understanding my condition. They think that if I don't scream with pain and am not dying of it the disease doesn't exist. When I say I'm tired they say I'm too young to be constantly tired, I'm only 37, what will happen when I'm 70? etc.. they just don't get it and I don't know what else to do to explain that I suffer terribly. And sometimes I don't event want to explain anything, I just let it be and say nothing.

Beginning of the discussion - 18/05/2017

Lack of understanding and support

Posted on
Good advisor

Hi @carrylondon, thank you for this topic. I'm sure you will soon hear from other members sharing their own stories.

I think you should talk to your doctor or counsellor to get advice on how to explain the condition to your family. Maybe there are some events for carers, lectures or such.

Good luck and let us know if you succeed in making your family understand and accept your condition.

Lack of understanding and support

Posted on

@carrylondonย Hello,

I think you will find this article that we recently published to be interesting, it is all about your loved ones understanding your condition. You can find it by clicking here.

I hope this helps!

Lack of understanding and support

Posted on

Hi guys!

My partner has had UC for around a year and a half, very severe, and required surgery for a colostomy bag within a month of diagnosis. He is currently in the process of having it reversed and has just had his second surgery.

1. Is it normal to produce a lot (i mean a lot) of mucus after surgery? It leaks out with no control and has done for over a week. 

Also, seeing my partner so Ill with little support was heartbreaking. I am studying psychology at masters level at Anglia Ruskin University and am hoping some of you lovely people will assist me in my research, which, if I gain enough participants will get published. 

Hi all!

Good news! My partner had his second reversal surgery and is recovering relatively well!

Also, if you haven’t completed my psychology master’s dissertation project on UC, help-seeking, quality of life and depressive symptoms, please could you fill out 4 questionnaires? ๐Ÿ˜Š I’d be so grateful as I need around 50 more participants.

Here is the link, it will take 10-15 minutes to complete! Please make sure you submit your response at the end ๐Ÿ˜Š: https://aruspsych.eu.qualtrics.com/jfe/form/SV_cYfKdXdpQqDfMEt

I am so grateful, I felt helpless when my partner got poorly with UC, and I am hoping some good will come out of my project which I am presenting to the NHS in order to provide more support and screening services for you guys!

Sending well wishes to all of you xx