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Crohn's Disease Forum » Support Forum » Feeling fraudulent, guilty and a bit stressed


05-25-2014, 09:29 AM   #1
HarryHiggins13
 
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Join Date: May 2014
Location: Birmingham, United Kingdom

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Feeling fraudulent, guilty and a bit stressed

Hi guys,

I was only diagnosed about a month or so ago, but have had problems from the start of 2014 (Not long compared to some I know). I find it really difficult to explain to people how I'm feeling, and I try my best not to let Crohn's affect what I can and can't do.

Obviously sometimes it gets the better of me and I can't do what I planned. The problem is I only see other people when I have the energy or ability to get out of bed and do something, so they only see me when I look ok.

I think people think I'm putting it on, or doing it out of laziness. It's really starting to get me down, especially when people say "Oh, you look better" as if that means I feel better.

I'd really appreciate any advice you guys might have on explaining to people how I'm feeling without sounding as if I'm moaning, as generally I'm a pretty positive guy

Thanks in advance,

Hope this is in the right place

Harry
05-25-2014, 01:01 PM   #2
Ness1993
 
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Hi Harry
Have you ever heard of the spoon theory? The woman who made it up has lupus but its the same sort of principle. It really helped me to explain to people how hard simple things can be such as just getting out of bed. I just tell people that I have to plan everything and consider what pain I'm the whole time where as they wake up with an unlimited amount of possibilities.
Hope it helps or gives you an idea
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Diagnosis: Ulcerative Colitis March 14
Current medication: Waiting on new medication & Omeprazole
Previous medication: Prednisolone, Pentasa & Salofalk
Currently in a flare
05-26-2014, 06:27 AM   #3
Axelfl3333
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Join Date: Mar 2013
Location: Coatbridge, United Kingdom
You get past the you look ok thing,when I meet people that I worked with they think I,m at it !they obviously don,t see you on the days when your unwell with pain,fatigue,trots and joint pain and any other horrors that pop up with crohns,ignore it.
P.s nice labs
05-26-2014, 09:48 AM   #4
valleysangel92
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Hello,

Crohns is a big adjustment and you seem to have a good attitude towards your illness and how it will affect your life.

It's difficult for other people to understand how we are feeling. People who don't have chronic illnesses can struggle to understand how exhausting it is to constantly be in pain or feeling sick or drained. They can't comprehend how frustrating it can be or the effects the medications can have on us.

I get told I look better all the time, but it doesn't always mean I feel better. The people who matter generally understand this now. If they don't put the effort in to try and get it then I don't put the effort in to worry about what they think.

It does get easier, you learn to let it slide and go over your head and it stops being such a big deal.

If you want to, you could get people to look at this forum so they can see how crohns effects people on a physical and emotional level . It will help them to see that looking well doesn't mean you feel well. Be as open as you feel comfortable with, the more you can tell them the more they will be able to understand. Just remember that if people aren't willing to learn then they aren't worth worrying about.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-26-2014, 11:33 AM   #5
Daisy123
Senior Member
Hi Harry, most of us have that 'oh you look fine' response. The fact that crohns is an invisible illness can be good as people don't treat us differently. The bad side is that the disabling effect of the illness is invisible. I was told I was mentally ill by someone because I used the disabled toilets last week. It is frustrating. Hopefully medication will make you feel better. You absolutely not should feel fraudulent, it is a horrid illness
05-26-2014, 12:33 PM   #6
gemling
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Join Date: May 2014
Location: United Kingdom

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I can understand your sentiment, Harry. I go back to work tomorrow after my first hospital admission and finally being diagnosed. I feel like a bit of a fraud because I feel pretty good right now and look so much better (I've gained weight, lost the circles under my eyes, etc). My consolation is that I sit near HR so they've seen me doubled up in pain over my desk pretty much every day since the beginning of the year, so they know how sick I was then.

I just worry they think that because I've got treatment that I am now 'better'. I hope that the treatment will put me into remission. But as of right now, as we know there is no cure for Crohn's so we will never really be truly 'better'.

I have a back to work meeting in the morning with my boss and HR, so I am hoping to express this so that they know I AM still ill, despite how I look.
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Diagnosed May 2014
Jul 2014 Blockage caused by flare up
Sept 2014 Finished 3 Weeks of EEN. Started LOFFLEX diet
Mid-Sept 2014 Another blockage
Oct 2014 Started Infliximab


Current Medications:
Infliximab Infusions (Remicade), Loading doses
Azathioprine (100mg)
Pentasa (4g)
Supplements:
Adcal-D3 (1g)
Ferrous Fumarate (420mg)
Multivitamin
05-26-2014, 12:57 PM   #7
Chester31
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Gemling, I notice you're from the UK. Have a look at the Crohn's and Colitis UK website - they have information on IBD and employment, with info for both employers and employees. Might be worth giving your boss/HR a copy of the guide for employers.
05-26-2014, 01:01 PM   #8
gemling
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Join Date: May 2014
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Hi Chester, thanks for the tip. I will check it out. I am absolutely certain my work will be great because we are an HIV/AIDS charity, therefore they DO understand chronic illness and even before I was diagnosed they would always ask me what they could do to make my job easier and how the rest of my team could assist me. They've been fab. I just hate "offical" meetings, know what I mean? But I will print out the sheet to have on hand.

Thanks!
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