Ah, people just love giving advice don’t they- even if they have no idea what they’re talking about. Here are some of the best and worst pieces of advice I’ve been given over the years about my Crohn’s.
4 pieces of advice I’m glad I ignored:
1. “Eat what you want when you’re well”
Although I agree that you should make the most of the foods you love whilst you can actually eat them, this is clearly going too far. It’s true that specific foods don’t cause inflammation, but they do trigger symptoms and can even catalyse a flare up. I know for a fact that if I ate whatever I wanted when I was well, I wouldn’t be well for long. Going mad and just eating anything is never a good idea in my book, you need to know what suits your system and what doesn’t so that you can adapt your diet accordingly. That way, you can still enjoy food when you’re in remission, but you can be confident that you aren’t jeopardising anything.
2. “Forget about school and your exams”
This is what I was told by one of my doctors when I was in hospital from a bad flare up in the months leading up to my GCSEs. He tried to convince me that the severity of my flare up was a good enough excuse to basically drop out of school and worry about my future later, but I had other ideas. Despite being so ill, I had been studying for several months already (I started early!) and everyone, including myself, was expecting me to do really well. I wasn’t about to let my illness stop me from achieving the grades I knew I deserved. So, much to my doctor’s disgust, I remained very ill throughout the entire exam period and simply sneaked into school before each exam, sat it in writhing pain in a separate room to everyone else, and then returned home/ to the hospital afterwards. Don’t get me wrong, it was NOT easy, but looking back all I see is a pretty impressive exam certificate, one which I would have been ecstatic to receive whether I had Crohn’s or not, and that was my goal.
3. “Forget about the good universities, you need to go to one that’s close to home and your hospital”
Boy am I glad that this went in one ear and out the other! A school “counsellor” (I use that word incredibly loosely) said this to me in a meeting during my final year at college. She didn’t know me from Adam but thought she knew what was best for me and what I was capable of just because she had speed read my file 2 minutes before my appointment. Apparently, I would not survive unless I had my parents and my doctors on my doorstep, and I would be stupid to even consider applying to where I actually wanted to go to university- I had to put my illness above everything else. Well, let’s just say that this appointment didn’t last that long. I told her that I was equally if not more capable than anyone else of going to university and being successfully independent, illness or no illness, and that I was going to fulfil my dream of going to my first-choice university even if it was several hours away. And sure enough, I got the grades and an offer from my first choice uni and I loved living alone after being stuck unwell and at home for so long during my childhood.
4. “Make sure you tell everyone at university about your health so that they’re all aware”
Now this one is a little more individual I think. Some people like telling those around them about their health issues so that they are aware of their situation and know how they can help if necessary. But personally, I have always taken issue with the idea that everyone has to know what goes on in my private life, especially when I’ve only just met them! I mean, “Hi, I have a chronic illness” isn’t exactly a good ice-breaker… Plus, an issue that’s common among people with chronic illnesses is that we don’t want to be defined by our illness, so surely highlighting it to everyone so soon is about the same as wearing a t-shirt for the rest of the year that says “I’m the sick one”? In my first year of university, I waited an entire term to tell a single one of my flatmates and even then, I didn’t disclose what was actually wrong with me because I didn’t think it was necessary. All I thought they actually needed to know to be a better friend to me was how my illness affects me. I made sure I waited until I knew who my friends really were and until I knew that I could trust them rather than just telling anyone who would listen.
4 pieces of advice I wish I’d taken:
1. “Tell someone”
This may seem like a bit of a contradiction given my last point, but bear with me. Although I am glad I didn’t immediately disclose everything about my condition to everyone in sight, I do admit that perhaps my first year of university would’ve been a tad easier if I had told one or two people earlier than I did. As it turns out, I did start to become unwell and it was difficult trying to fend for myself without any assistance sometimes. I suppose it’s about finding balance; it’s probably a good idea to tell someone, just make sure that you’ve known them for long enough that they consider you a friend before you lay all your cards on the table and that they are the kind of person that you could potentially rely on should you need to. It’s also nice being able to confide in someone other than your family about your situation, especially at an overwhelming time like starting university.
2. “Don’t take on too much”
I was always a classic workaholic and a consistent overachiever. I wanted to be the best and do as much as I possibly could with my time, despite warnings that I would burn myself out or make myself ill. I always stubbornly ignored the idea that stress aggravated Crohn’s symptoms and stupidly, I took on even more to try and prove this seemingly ridiculous notion wrong. But, as it happens, it was right. I was wrong. What I have now learnt is that having a chronic illness really does take it out of you. You have to pace yourself and sometimes that may mean compromising a little, but that’s okay. In the long run, it’s better to do a few things well and really focus your capabilities on them rather than trying to do far too much and adding to the existing stress and fatigue caused by your illness.
3. “Sometimes your body needs rest”
Similar to the piece of advice above, I always found this statement a bit patronising to be honest. Plus, I didn’t want to be accused of being lazy as that’s the complete opposite of who I am. But, over the years I have realised that there is nothing wrong with having a break and getting some rest when your body needs it. Rather than just mindlessly trying to “power through” when I felt exhausted, I really should have listened to my body more from the get-go and stopped to take a breather every once in a while without feeling guilty for not being super productive.
4. “Keep a personal record of EVERYTHING”
This is arguably one of the most important pieces of advice that I really should have taken on board. I guess because I was so young when I was diagnosed, I didn’t really understand what was happening to me and I put my complete trust in my parents and my doctors. Though I kept a journal which detailed some of my symptoms/ experiences etc. (which I am eternally thankful for), I wish I’d been more consistent with keeping track of everything. I wish I’d kept a food diary when re-introducing food after my first liquid diet and I wish I’d tracked my daily symptoms sooner. I only started doing this earlier this year after it became a habit when I was enrolling into a clinical trial. It’s a great reference for seeing how my symptoms change over time and keeping an eye out for any red flags which may be a sign of an impending relapse. I also wish I’d taken notes during/ after appointments as I frequently receive appointment summary letters in the mail which are nothing short of complete fiction. Plus, I consistently receive conflicting information from different doctors only for them to deny it later. With all that being said, record everything and anything for your own good – you’ll be glad of it at some point I can assure you!
4 pieces of advice I’m glad I took:
1. “Advocate for yourself and be educated”
Being well-informed about your condition is essential. It means that you can be self-aware and that you know what to expect from your illness. What’s more, medical professionals will likely take you more seriously which ensures that you can successfully advocate for yourself. After all, no one else is going to fend for you. If you think you need a scan, request one. If you have questions, ask them. If you think you aren’t getting the support you need, let your team know what else they can do for you. Your care should not consist of you being a passive patient, you should work with your doctors and make sure that you have the level of care that you need and deserve.
2. “Always disclose your condition to employers/ staff”
Whether in the context of education or work, I have always chosen to disclose my health problems. It can be a risk if you are applying for a role as despite all these new “inclusivity” guidelines, a lot of people with chronic illnesses can’t help but listen to that tiny voice in their head that says they may not get the job because of their health problems. But in my experience, disclosure has always been the best thing to do. At school this enabled me to get special exam arrangements and gave me access to a green card, which meant that I could use the bathroom whenever I needed to. Then at university, I was given a DSA allowance to help fund my laptop and various pieces of software for when I was unwell as well as a bursary which paid for my en suite bathroom. Though I have not yet had a full-time job, I could rest easy when I had to take a sick day during my work experience because my boss knew exactly why I was ill and didn’t need to question me about it further. The saying “If you don’t ask, you don’t get” definitely rings true when it comes to getting support for your illness, so it’s always worth saying something early on.
3. “Don’t compare your situation to others’”
Anyone with IBD will tell you that everyone’s experiences are so different, from their disease behaviour and its distribution to their daily symptoms, their diets and their triggers. The worst thing you can do is blindly go by what other people suggest just because it works for them. Sure, it may be useful to get some ideas and take inspiration from other people, but when it comes to complex illnesses, no one’s word is the gospel. I know it can be frustrating having so few guidelines on how to adapt your life after a tough diagnosis, but it’s all about trial and error and finding what’s best for you. At the end of the day, what may work for one person may not work for someone else.
4. “Live in the moment”
If you only take one thing away from reading this article, I hope this is it. Unfortunately, human beings tend not to recognise or truly appreciate what they have until it’s gone, and this is definitely true for those of us who have lost our health. The best thing anyone with a chronic illness can do is make the most of the times when they are well and not take them for granted, as you never really know when you’ll get another chance to just have fun and feel okay when things can change so quickly. Don’t put off doing the things you’ve always wanted to do, put yourself out of your comfort zone more and try as many new experiences as possible to avoid having regrets later on in life. And even though I fully appreciate the very real fear people with chronic illnesses have of things going wrong or becoming unwell all of a sudden, the best advice I can give is try not to let this stop you doing what you want to do. Cliché as it sounds, you do only live once.
Me and My Crohn's 