We know that living with IBD is a challenge to say the
least; just a few of the symptoms that manifest are, weight loss during
flare-ups and gaining it all back when in remission, running to the toilet every
two minutes, crippling fatigue and intense pain; lets face it the list can be
endless.
So certain comments - such as those that focus on weight, looks,
diet and perceived attitudes can be really upsetting and hurtful. We have to calmly
educate our friends and family as to why we didn’t attend that wedding or
couldn’t make our nephews 21st; here are a few examples I have encountered
in my 28 years of having CD.
You looked fine last week, what’s
the problem?
Despite my illness I still want to lead as normal a life as possible. It
is often a real challenge to do the things that healthy people take for
granted like, going on holiday, meeting up with friends for a drink and catch
up, or going for a long walk….. you get the idea? Even when I feel moderately
well it’s still a challenge to do these activities, but I guess most people
like myself with IBD just put on a brave face and get on with it. I wouldn’t expect
my friends or family to know that I’m dealing with terrible fatigue, or I’d
been up most of the night on the toilet but when I point it out I don’t want to
have to discuss the point.
I wish I could eat anything and stay slim
I’ve had this said to me many times in my 28 years of CD.
Seeing yourself literally fading away when peering into the mirror during a
flare can be devastating so this comment particularly hurts as weight loss is
often due to flare-ups that cause severe abdominal pain with bloody diarrhoea
that can mean spending most of the time in the bathroom.
My friend has CD and he’s doing great
I hear this one often, its usually followed by me being
told that their friend with CD has just completed a marathon. Unfortunately,
IBD affects everyone in a completely different way in its severity. It also
depends where the inflammation presents, and what medication you are on or if
you have had previous surgeries.
Why are you so tired all the time?
Its wrong to compare feeling tired after work and having
chronic fatigue due to CD. There are many reasons why IBD effects your energy levels,
this can be due to low iron or B12, having limited sleep due to visiting the
toilet all night.
My friend has CD and she can drink alcohol.
Maybe it’s a UK thing? But I find people can get very suspicious
of folk that don’t drink alcohol. For me, alcohol is a complete no go, it gives
me instant diarrhoea and makes me feel dreadful; on the other hand I am a cheap
date as I can get extremely drunk from one alcoholic beverage.
My friend is on the blah, blah diet and he is now cured!
If I had a penny for every time I’ve heard this one…first
up diet can help prevent flare ups and keep you in remission, I know as I’ve
been fortunate to find a diet that keeps me in remission (the LOFFLEX for
reference). However, it’s incredibly difficult to find the right diet, as there
are so many to choose from: the IBD-AID, lowfodmaps the SCD, keto, to name just
a few. And for reference there is no cure to date for IBD. But some diets
definitely keep the inflammation markers down. I know this because I’ve got
access to IBDoc – so for example, I know that egg actively increases my
inflammation and although wheat makes me feel terrible, it doesn’t necessarily
increase my inflammation. I also know not to say ‘ well I can have rice cakes’
so you must be able to as well. Its such a unique disease, with entirely
different responses the only question I want to hear is – do you think home
testing will become the standard way to manage Crohns – yes I would shout with
glee – yes ask me that question – yes please. Oh and can we share the data,
look at the worldwide patterns? See if there is any standard can do’s and don’ts
but I'm convinced we’ll get there.
I guess people never intend to offend, upset or in anyway
make you feel worse than you’re already feeling so I never get upset with
people, but share my blog with people that have asked you these questions in
the past and maybe just maybe we can start gently getting our point across?