Having had symptoms of Crohn’s Disease since as young as I can remember & being diagnosed at aged 7, it’s safe to say I’ve experienced a comment or two that have been eye-rollers & where a little part of me inside has screamed.
Now, I must point out here that I’m not saying that everyone who makes one of those comments does it on purpose or out of nastiness, nor that negative comments are regularly received (in my experience & many others too), but still, these comments regardless have made an impact on myself, even if I’m over them now.
It’s completely okay and quite understandable to feel this way if you experience this, but it is important to remember that you are not your diagnosis, even though at times I know in my experience it has felt all-consuming, like IBD is all there is to my life. However, I have got past that stage, and maybe if you’re in a difficult place right now & can’t see much hope, take it from me that I believe things will get better. There are many treatments for those with Bowel Disease and contrary to me having an ileostomy bag, not all cases of IBD lead to surgery and can be managed in other ways.
So let’s start with those comments we really don’t need to hear. I could make a long list of these & I’m sure many of you could contribute, but I had to keep it to a blog post!
Trigger warning: discussion of weight, mental health & chronic illness.
1. “But you don’t look ill!”
Firstly, I think it’s important to try and see two sides of this comment and be mindful of the context it’s been said in. For example, if you’ve explained to someone how rubbish you feel and they just aren’t showing any signs of getting it and they then say this, you’ll most likely feel frustrated, lonely & like your feelings are insignificant (or at least, I know I would). On the other hand, some people who don’t know what to say but want to say something may say it harmlessly as a compliment (as back handed as it may seem). It might be their way of trying to say that your illness hasn’t taken away your beauty, but still, it can feel very insensitive, especially if you are feeling fragile yourself.
I have had this said to me. It can feel very frustrating at times. Just because you can’t see something, it doesn’t mean it isn’t there & it doesn’t mean that the impact it has on someone is less than something that’s visible. You don’t know what it has taken that person to get ready for the day or the pain they could be in. This goes for a lot of illnesses and to be honest, every person…you don’t always know what someone is going through. Just because someone struggles with something in silence, it doesn’t mean it isn’t happening or that that person doesn’t deserve to be listened to should they choose to speak out.
2. “I wish I was skinny like you!”
“Well I’ll swap you for my illness then” is something I’ve said to this comment on numerous occasions which soon gets people thinking about what they’ve said. My weight is something that I’ve struggled with hugely for as long as I can remember.
To me, the word ‘skinny’ has not symbolised health for me. It’s felt like an insensitive comment on the outcome of an illness that has had a big hold over me for many years of my life. Luckily, now I am in a much better place with it and can maintain it better, but my weight is still in my mind & I worry about how not to lose it sometimes, especially if my appetite is limited.
In a world that unfortunately can be so hooked on appearance, it can sometimes feel like people don’t see beyond weight when looking at someone.
Over the years, I have gradually learnt to embrace the skin I’m in, but I still get days where I worry about things such as my weight.
3. “But you seemed okay when I saw you out, why weren’t you at work the next day?!”
This has always been the type of comment that makes my blood boil. Nowhere in my plan of dealing with IBD have I had “let IBD rule my life” and have managed over many difficult years to develop ways to go about my daily life, even when times are tough, over determination to live my life. Sure, there have been times where IBD has ruled my life through no choice of my own & I’ve had to go easy & literally strip my life back to even start the road to feeling better, but it doesn’t own me.
IBD symptoms for me can literally come on like a light switch. I can go from feeling okay to suddenly absolutely exhausted and unable to concentrate in minutes. If I don’t feel like eating much, this also impacts my energy and how much I can push through the fatigue I experience pretty much daily.
If you see me at a time where I’ve got a smile on my face and seem fine, I might be, but I also am an expert at faking a smile & not telling people (until recent years on my social media) when something is wrong or how I nearly didn’t have the energy physically and/or mentally to go about my life that day.
4. “Have you tried doing exercise?”
Again, this is one of those comments that can be said with genuine intentions. Some people don’t know what to suggest, especially with something they don’t understand and a lot of people may think saying this is a helpful suggestion.
Unfortunately, chances are whatever you suggest, especially exercise such as running of yoga etc, I’ve already thought of and for whatever reason such as being in pain or being exhausted I haven’t been able to. It doesn’t mean I’ve given up or don’t want to try, sometimes it simply means that I don’t feel I can and that I must listen to my body.
There are times where I’ve learnt when I just need to give myself a gentle push & when it’s more than that. Yoga does help me but I don’t have a set ritual that I follow or times in a week that I force myself to do it. I do it when I want to & go with movement that makes me feel good.
5. “I know what you’re going through, I was stuck on the toilet with an upset stomach at the weekend.”
IBD is way more than “just an upset stomach”. So many people unfortunately don’t get this and needless comments like this can make people who do have IBD feel like they’re unnecessarily complaining or wonder why they can’t just “get on with it”. IBD is a disease that can damage your digestive system, sometimes permanently… It isn’t just a case of having diarrhoea for a few days then feeling alright again.
Unless you have IBD yourself, it is very unlikely you know what said person is going through. I find it a lot more supportive if I hear “I can only imagine what you must be going through” rather than someone claiming they’ve walked in my shoes or similar, especially those who don’t know much about my illness.
People can offer sympathy, but it’s often empathy that I find helps the most from others in similar situations to myself. Even then, IBD is different for everyone.
Ways in which you can support someone with IBD include:
- Listening. A listening ear can be so undervalued. Sometimes, all I need is to let off some steam to somebody who cares.
- Educate yourself. It can make such a difference to someone knowing that they took the time to look up IBD and how it can present itself.
- Offer to go to their medical appointments with them or even just take them there and wait for them, even if you don’t physically go in the appointment.
- Encourage but don’t force communication – for example, saying something such as “I’m here if you need to talk” can be enough.
Be understanding when they can’t make an event and always offer ways to include them that they may feel more comfortable with such as a phone call or going over to them & taking a movie to watch or having a short catch up in a place they feel comfortable.
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