When IBD feels unfair: coping with the “why me?” moments

Living with inflammatory bowel disease (IBD) can sometimes feel really unfair. You might look at your friends and wonder why they can eat what they want, go to school without worrying about the toilet, or make plans without thinking about how their body might feel.

You might wonder, “Why did this happen to me?” or “Why do I have to deal with all of this when other people don’t?”

If you have ever felt this way, you are not alone. Having IBD can bring up lots of difficult feelings, and it is okay to admit when things feel unfair. You do not have to pretend to be positive all the time.

💭 It’s okay to ask, “why me?”

There is no easy answer to why you developed IBD. It is not something you caused, and it is not a punishment for anything you did.

Sometimes, not having a clear answer can make things even harder. You might feel angry, frustrated, sad, jealous or confused. You might even feel guilty for being upset when you know other people have difficulties, too.

All these feelings are normal.

You can be grateful for the people who support you and still wish you did not have IBD. You can have a good day and still feel upset about your condition. You can love your life and still hate what IBD sometimes makes you deal with.

Two things can be true at the same time. You do not have to choose between being positive and admitting that something is hard.

😠 When it feels like everyone else has it easier

It can be difficult watching your friends do things that you sometimes cannot do as easily.

Maybe someone cancels plans because they are tired, but you have to cancel because of pain or urgency. Perhaps your friends never have to think about medication, hospital appointments, blood tests or whether there will be a toilet nearby.

You might feel left out when you miss school, sports, parties or other activities because of a flare-up.

It is okay to feel jealous sometimes. Jealousy does not make you a bad friend. It often means there is something you wish you could do, or something you feel you are missing out on.

When these feelings come up, try to remind yourself that you are not seeing the whole picture of someone else's life. You cannot always know what another person is dealing with, just as they might not understand everything you experience.

Your feelings still matter, though. You do not have to dismiss them just because someone else might have difficulties of their own.

🌧️ Dealing with the days when everything feels too much

Some days, IBD might feel manageable. On other days, even one more appointment, symptom or change of plans might feel like too much.

When that happens, you do not need to fix every problem straight away. Sometimes, the first step is simply recognising how you feel.

Here are a few things you could try:

• Name the feeling. Are you angry, disappointed, exhausted, worried or sad? Putting a name to a feeling can make it easier to understand.

• Give yourself permission to feel it. You do not have to push away your emotions or pretend everything is fine.

• Take a break. Listen to music, watch something funny, read, draw or do something else that helps you relax.

• Talk to someone you trust. This could be a parent, sibling, friend, teacher, IBD nurse or another person who makes you feel safe.

• Focus on one small thing. If everything feels overwhelming, think about what might help you get through the next hour rather than worrying about the whole week.

You do not have to turn every difficult moment into a positive lesson. Sometimes, getting through a tough day is enough.

🫂 When you feel different from your friends

Having IBD can sometimes make you feel as though you are different from everyone around you. You might worry that your friends will not understand, or feel frustrated when you have to explain why you cannot do something.

Remember that having IBD is something you live with, not everything you are.

You are still the same person with your own personality, interests, friendships, goals and sense of humour. IBD might affect parts of your life, but it does not take away the things that make you you.

You also do not have to tell everyone about your condition if you do not want to. You can decide what you share, who you tell and when you feel comfortable talking about it.

If you want your friends to understand a little more, you could explain what IBD means for you. You do not need to give them every detail. Sometimes, saying something as simple as, “I might need to change plans if I feel unwell, but it doesn't mean I don't want to hang out,” can help.

Good friends might not always understand straight away, but they should try to listen and respect what you need.

💚 Finding things you can control

IBD can sometimes make you feel as though decisions are being made for you. You might have appointments to attend, medication to take, symptoms to manage or plans that change unexpectedly.

When so much feels out of your control, it can help to focus on the small things you can influence.

You might choose the music you listen to on the way to hospital, decide what hobby you want to try, make plans with a friend somewhere comfortable, or speak up about what would make an appointment easier.

You can also ask questions about your treatment and be involved in decisions about your care as you get older.

These things will not make IBD disappear, and they will not always make a difficult day feel better. But they can help you feel more involved in your own life.

And remember, asking for help is also a way of taking control. You do not have to manage everything by yourself.

🌈 You can still have good things to look forward to

When IBD is difficult, it can sometimes feel as though your condition is taking over everything. You might struggle to imagine how things will get better, especially during a flare-up or a long period of feeling unwell.

You do not have to figure out your whole future right now.

Instead, think about the things you enjoy or would like to do. Maybe it is spending time with friends, learning an instrument, playing a sport when you feel well enough, getting into a new hobby or planning something special with your family.

Some plans might need to be flexible, and you may need extra support along the way. That does not mean you have to stop having hopes, dreams or things to look forward to.

Your life can contain difficult days and brilliant ones. It can include hospital appointments and fun experiences, frustrating setbacks and exciting new opportunities.

IBD is part of your story, but it is not your whole story.

🩷 When you need a little extra support

If thoughts about IBD feeling unfair are becoming overwhelming, or you are feeling sad, angry or worried a lot of the time, it can help to talk to someone.

You could speak to a parent or carer, your IBD nurse, your doctor, a school counsellor or a mental health professional. They can help you work through what you are feeling and find ways to cope.

You do not need to wait until things feel unbearable before asking for support. You deserve help with the emotional side of IBD just as much as you deserve help with the physical symptoms.

If talking feels difficult, you could write down what you want to say or send someone a message instead.

You might start with, “I'm finding it hard to deal with having IBD at the moment, and I need someone to talk to.”

That is enough to get the conversation started.

⭐ Remember this

It is okay to have moments when you hate having IBD. It is okay to feel jealous, angry, disappointed or sad about the things it makes harder.

You do not have to be brave every day, find a positive side to every situation or prove to anyone that you are coping.

Be patient with yourself. Celebrate the little things, ask for help when you need it, and give yourself permission to have difficult days.

You did not choose to have IBD, but you deserve support, understanding and opportunities to enjoy being a kid or teenager. And even when it feels unfair, you do not have to face it alone.

This article is for general information and support only. It is not a substitute for professional medical advice, diagnosis or treatment. If you are struggling with your feelings or finding it difficult to cope with IBD, speak to a trusted adult or healthcare professional for support.