Opening up about Crohn’s disease

Welcome back to A.P Writing everyone! I hope you’re all well. As the title suggests, I’ll be discussing why it can be so hard to open up about having crohn’s in this post. I’ve stated in numerous posts previously just how horrible having crohn’s disease can be, but in this post, I’ll be explaining why it’s even harder not being able to express how it feels to others.

Nobody understands how I feel
If you suffer from some form of IBD (inflammatory bowel disease), whether that’s crohn’s, UC, or colitis, you’ll probably have felt at some point that you’re all alone. When you try to explain to someone that you suffer from this invisible disease and they just stare back blankly, it can be frustrating. I’ve been there more times than I can count, but it’s not a reason to keep how we’re feeling to ourselves. Trying to educate people on some of the things we have to deal with is an important step in breaking the stigma surrounding IBDs. For someone who’s never felt the pain and fatigue that crohn’s can cause, it can be hard to comprehend. However, there are lots of people who do understand, who do want to learn about the affects of these diseases. Don’t ever feel scared to open up because you feel that someone won’t understand your illness; it is a part of who you are, and therefore important that they understand.

Isn’t IBD just IBS?
The answer to that question is absolutely not. Let me tell you from someone that suffers from crohn’s disease, comparing it to IBS (irritable bowel syndrome) can at times, frustrate the life out of me. Now, I’m not saying IBS is a walk in the park; it can also be a very nasty thing to have to deal with. I just don’t feel that the two can be compared, and worrying that people will compare IBD to IBS might prevent people from opening up properly. There are some similarities in the symptoms caused by both IBD and IBS, but the long term affects differ quite significantly.

I’m embarrassed by my illness
In response to the above, I’ll put this question to you: why are you embarrassed? I think understanding the answer to that question makes talking about your illness easier. Having an IBD can be embarrassing if you let yourself believe that it must be that way. I used to get really uptight about everything: going out, meeting friends, putting on weight, losing weight. The reason for this was because of how I perceived my illness would come across to others; this caused me to feel embarrassed by it. As I grew older though, It became clear to me that crohn’s is never going to go away, so why not embrace it? There are some really horrible affects that having an IBD can have on you and your body, but if you let them get to you, it will be hard to shake that embarrassed feeling. Being bloated is something I deal with on daily basis with crohn’s disease. I’m not talking about being a little bloated; I’m talking about looking like I’m 6 months pregnant. This used to prevent me entering any social situations because of how awkward and uncomfortable I felt, but I realised I couldn’t live my life like that. Being fatigued is also a bit of a struggle, but I try to manage my time and energy as realistically as possible. If we don’t explain to people about these things, how are they to know that we’re experiencing them? Being open and honest will take away some of that embarrassed feel and allow you to live your life too.

I feel awful
There will be times during your life if you suffer from an IBD when you feel truly awful. This could be because you’re having a particularly bad flare up, or perhaps you are going through a period where your medication isn’t working and you’re feeling incredibly fatigued. I personally feel that it’s important in these situations to be honest; if you’re ill and struggling, let people know what you’re going through. Of course, this is personal to the individual. Some people may prefer to recover quietly without making others aware, and I have to say that I can understand that mentality as well. I have a select group of people I talk to when I’m suffering from a flare up; I couldn’t go through it on my own. So, next time a friend contacts you to ask why you’ve been absent, perhaps it would be beneficial to open up and let them in a little. You might find that you open up another support network for yourself, and I’ve found that most people tend to be very understanding when you discuss how you’re really feeling.

It’ll be easier for everyone if I keep quiet
When I’m ill, I sometimes feel that I’ll be burdening someone by opening up about how I’m feeling. I feel that my problems will end up becoming their problems which isn’t fair. I used to do this all the time at work; I’d turn up feeling miserable and wanting to be anywhere else but there. The truth is I didn’t make anyone’s life easier by doing this, and more than once my employer sent me home because they could tell I wasn’t fit enough to be at work. By opening up and talking to them I could’ve recovered properly, and they could’ve organised suitable cover in time. It shouldn’t come to the point where you have to push yourself through fatigue, pain, and everything else that comes with an IBD. Your recovery is the most important thing, and unfortunately we have to become a little selfish in those types of situation. We have to put our health first; don’t be afraid to say that openly. If you’re not well enough to work or go out, then tell people; the only person you should be trying to make things easier for is yourself. So, put yourself and your illness first when you need to; don’t brush it aside because you feel like it’s less important than everything else.

Will people think I’m weird?
Having an IBD can, at times, make us feel uncomfortable about ourselves and how will be perceived by other people. There are things we have to go through that from the outside might seem quite weird. A few examples might include: colonoscopies, regular weight loss, poor appetite, and fatigue. It can be hard to grasp why someone would have to experience some of those things on a regular basis, and this is exactly why we need to talk to people so they do understand. You’re not weird because you have an IBD; it’s just a part of who you are, and that’s the truth. Like I stated earlier, I embrace it now. Having crohn’s has impacted my life in such a huge way that it is important to me that others understand that. I’m not worried about people thinking I’m weird anymore, and if someone won’t understand or show me support, that is their problem, not mine. Like I stated previously, I have a close group of people I talk to who motivate me and keep me going when things get hard. They don’t think what I’m going through is weird, and that support counts for a lot. I was particularly worried about starting a course of Inflectra treatment; I worried for a moment whether people would think that was weird. The more you open up the easier it gets though; you’ll have less pressure to bare and more people there to support you. Have a joke about things every so often, and laugh when things get a little scary because it really does make everything seem less daunting. That has been the only way I’ve made it through the last few months as my health deteriorated.

Will I be taken seriously?
I’m sure we’ve all been here before. You try and explain to someone the affects of your illness or how it impacts you, but they just don’t take you seriously. I’ve been told that my IBD is just another form of IBS; I’ve been told by people that don’t suffer from an IBD what will work and what won’t. While I’m writing this, I’d just like to point out that everyone who suffers from an IBD is different. What works for some might not work for others in terms of treatment, diet, and lifestyle. If you know someone with an IBD, listen to what they are saying and not what you’ve heard from someone else; there is no universal cure for an IBD, and each individual is fighting their own personal battle. When I get comments like those above, I switch off now. If that person isn’t interested in listening to what I have to say then they’re not worth the effort involved in trying to explain. The vast majority of people will take what you have to say seriously, and for those that don’t , let them be. There is no point getting stressed; that will only make the situation worse. Keep calm and open up too the people who do deserve your time; open up too the people who will support you and take what you have to say seriously. An IBD can be hard to understand sometimes, especially for people who haven’t experienced what they can be like. I feel this is because it is possible to enter remission; it is possible to lead a normal life when our IBD is managed correctly. However, that doesn’t mean it shouldn’t be taken seriously at all times. I’ve experienced recently just how volatile crohn’s can be; it can be like flicking a switch sometimes. It will always be there.

I’m going to finish this post by stating just how important it is that we keep opening up and talking about IBD. Raising awareness will break any stigma that surrounds an IBD, which will make suffering and living with one far more normal in today’s society. We shouldn’t live in an age where we are scared to talk to people about how our illness is affecting us; I personally feel if that is the case then we’re going backwords. Having an IBD can have a huge impact on someone’s life, and they shouldn’t feel like they need to keep that to themselves. Whatever form you want to take in terms of raising awareness is positive. It could be simply having a conversation with someone and telling them about your symptoms, or maybe it’s doing a charitable walk. For me, I’m trying to raise as much awareness through A.P Writing as possible, and as the my blog grows, hopefully so will the awareness surrounding IBD.

Thanks as always for taking the time to read through my post everyone! I look forward to writing the next one. Please feel free to follow me on Facebook and Instagram.
Adam