What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

Why “How are you?” is difficult to answer when you’re sick so often

I'm often known for being honest, and saying it how it is, but, the fact is, that's not completely true.

I do want and like to share the ups and downs of my IBD and Ostomy journey on my blog and on social media. I'm passionate about raising awareness and that means that a certain degree of honesty and willingness to share is needed.

But, when you look closely, I have lied a lot, probably daily for months at a time. Not big lies, just the standard "I'm OK, thank you" response to the question, "How are you?", when the reality is so much darker than that.

So, I wanted to talk a little bit about the reasons that I, and I suspect many others that have a chronic illness, don't always tell the whole truth.

People don't really want to know when they ask.

When you feel unwell every day and you tell people how you actually are, you soon begin to notice their eyes glaze over with boredom, because they’ve heard it before. You said the same thing the last 5 times they’ve asked. People can’t understand why you’re still in pain, running to the toilet and suffering with joint pain and fatigue a whole year after you first became unwell. It’s assumed that you take your medication and you get better, but with IBD it’s often not the case, and it can take years to find a treatment that works for you.

No-one wants to be the "moaner" amongst a group of friends, and it often leads to you being talked about behind your back. It's not always necessarily nastiness, just a lack of understanding, and so it becomes easier to just say you are fine.

People don't really understand.

When people still do not understand, after you've repeatedly told them how you are and why, they often make comments such as "Hope you feel better soon", "Are you still not well?" or "Go have a nap." They’re well intentioned, but when you won’t just feel well soon, and no amount of naps will improve your fatigue, it can get really frustrating, so not telling people the whole truth saves the anger you feel towards people that still don't get it.

Acknowledging it makes it real.

Talking about how you are won't actually improve how you are in any way. Sometimes talking about it actually makes it worse, like acknowledging it makes it reality, and therefore more of a problem. I do not take sick days off work, because then I sit at home and have time to think about how rubbish I feel, and I feel angry that my illness has also stopped me just "getting on with it". It's bad for me, and I feel the same about constantly having to say you do not feel good.

Protecting other people.

My mum attends hospital appointments with me for one reason; to hear the truth. She doesn't trust me to tell her what is going on, how I really am and how I feel. I don't tell her because knowing, will actually make her feel bad. Knowing you cannot help someone you care for sucks. I know this because I feel it myself in the IBD community. You want to do something, say something to help, but you cannot. You feel useless, and I don’t want her to feel like that.

The woman isn't stupid. She knows when things aren't good, she just doesn't know in what way. The only way she can really find out is when I tell the consultant, because I always tell them the truth. That's the only way they can understand what's going on and help me.

Protecting yourself.

It hurts when your friends don’t really have any interest in the fact you feel terrible.

It hurts to find out you've been talked about negatively for something that's out of your control.

It's frustrating trying to explain what fatigue and your life is like, to then just to be told to take a nap or that "I understand how you feel after having gastroenteritis for 4 days." Do you? You think 4 days teaches you what a lifetime of unrelenting symptoms is like? Did you have all my extraintestinal manifestations at the time, or do you still actually just believe that I shit a lot? And now you know that's tiring?

It hurts to see the upset in other people's eyes that you put there. They feel useless and then I feel guilty. I don't like having visitors when I am in the hospital because when people see you with tubes and wires coming in and out of you, and weight falling off, they fear for you. They’re sad because I am sick, and I hate that.