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

Unfounded guilt in chronic illness

"I am sorry!"

"I'm sorry, I'm not going to be able to make it tonight."

"I'm sorry the house is a mess."

"I'm sorry I haven't been in touch."

"I'm sorry, I can't come in today"

"I'm sorry I'm late."

"I'm sorry, I fell asleep."

"I'm sorry, I don't feel like talking today."

"I'm sorry that you think I don't care."

"I'm sorry I am sick."

Having a chronic illness means often living your life feeling guilty, but why, when it's completely out of your control?

Because as humans, we are programmed to feel guilty if we let someone down or make someone feel bad, especially those that we're fond of.

Would we be there if we could? Of course we would! Would we have cleaned the house and been shopping and cooked dinner if we felt capable? Of course we would! It's never a case of choosing to be half a person. It's never because we don't respect someone's feelings and just can't be bothered to do something.

Healthy people still only have a certain amount of energy to use throughout the day, but people with chronic illness have less in storage. Sometimes it's a case of having to prioritise what you will use your energy for today, and sometimes that priority has to be yourself. Being quiet. Sitting down. Watching a movie. Colouring. Meditating. Reading a book. Anything to try and escape the reality that is wearing you down and frustrating the shit out of you. Just trying to find some time to relax and de-stress because illnesses such as Inflammatory Bowel Disease can be triggered by stress, so prioritising rest one day means having the strength to carry on for the next few.

It's not an easy concept to grasp for those that don't suffer so it's not uncommon to receive pretty pointless advice such as "get some sleep", when you're battling fatigue, when as a sufferer, you're fully aware that you will wake up just as exhausted anyway. It's not easy for people to understand how sick you are when they look at you and just see a person like every other.

Yes, I actually am sorry I am sick. I am not sorry for you, I am sorry for me, because every time I let people down and every time I don't do what I planned to and every time that guilt creeps in, it's me that cries about it. Whilst you're losing faith in me, and complaining to people about my moodiness lately and my distance, and that I let you down, I am suffering. I am scolding myself for being useless and not being stronger and not being a better person, but not a lot of people know that, because it's something I do alone, because my 'friends' are too busy discussing what a rubbish friend I am.

It's difficult. There's no escaping that, and there's also no escaping the guilt that comes with being half human, half sloth.

Please just know that we are trying. We are trying with every ounce of our being to live as normal a life as possible, but sometimes we will fail, and that's OK, because nobody's perfect and we must deal with the hand we've been dealt, even if that hand fucking sucks.