No, this is not a post about Covid-19 lockdown restrictions and who you can/can’t socialise with. I just like the term support bubble. Now we’ve got that out of the way, let’s talk support when you’re living with Crohn’s disease or Ulcerative Colitis.
Being diagnosed with IBD can feel confusing, scary and overwhelming. It can also feel like a huge sense of relief, especially if you’ve spent months on end being passed back and forth between doctors and hospitals, without much luck. Finally receiving that diagnosis is a bit like finally being heard, and finally feeling understood – even if it is just the beginning of your own understanding of what IBD is.
But who do you turn to when you have no-one to turn to? Now hun, that’s where I am an expert.
You see, I went through a lot of the diagnosis process on my own. Not because I didn’t have a boyfriend or friends – because I did. But because I closed myself off totally from help or from letting anyone in. That, and my support network at the time was pretty underwhelming. Unlike the many people in my life that I envy with fantastic parents and close knit families, I didn’t have that same web to fall into. I attended my bowel cancer screening on my own (FYI this is how my Crohn’s diagnosis started off) and even a text to my estranged Dad was greeted with a response about how his new wife was in Hospital with something more important than what I was going through.
After learning I had Crohn’s, my boyfriend at the time was supportive-ish, but it wasn’t without a constant narrative about how ‘boring’ I was that I was tired all the time, or how ‘old’ I was being if I didn’t want to go out to a party because I was either too fatigued or in too much pain. I remember this time period in my life as truly being quite shit, but also being very, very isolating, which is one of the reasons why I started this platform in the first place. Because the thing is: who supports you when you feel like you don’t know who your supporters are?
Let’s kick off with the heaven-sent team of professionals who are your IBD nurses. These people are definitely an amazing start for your support network, as they are not only medically trained but they also the answers to most of your questions – and if they don’t, they can point you in the right direction. Whether you contact them by phone or by email (or any other way you can contact your IBD Nurse in 2021) you can be guaranteed a response that has your best health interests at heart.
Never underestimate the power of a good friend. For those of us with slightly troubled family history’s, friends become the family that you choose for yourself (I really hate wanky quotes but that one is pretty good). I have some of the most amazing friends in the world but at the time of my diagnosis I had fallen quite distant from a lot of my social groups due to relocating and starting a business. I didn’t appreciate the importance of having good friends, something that I value so highly today. Whether you have one best friend or a group of amazing allies, keep an open dialogue with your pals and you’d be amazed at how many people step up for a friend in need.
Look, I don’t necessarily think that social media is the best thing in the world. In fact, in many situations it can be quite horrendous. But trolling and fake news aside, it is an amazing hub for online communities and conversation. Back when I first started Gut Instinct, the landscape for Crohn’s and Colitis communities online was few and far between – I’d even go as far to say as there was literally nothing I could find that I related with. And seeing as I knew no-one in real life who had IBD, creating a safe space for yourself online to connect with real life (behind a screen) people who were going through exactly the same thing as you is really quite magical. To be able to genuinely relate to someone and talk about ‘Pred’ without someone asking you what on earth it means is liberating, and as long as we operate online with respect and boundaries, finding support through social media can be powerful.
When in doubt, turn to the big players – in this instance, Crohn’s and Colitis UK. There are so many other charities and organisations out there who offer fantastic resources, events (non-lockdown) and support lines, but CCUK has to be one of the most iconic places to go. Their website is brimming with information in a non-overwhelming way, in addition to positive news bites and membership options. Whether you’re newly diagnosed with IBD or a long-time sufferer just looking for that extra little bit of support, pages like this are a great place to turn to.
This might seem like a weird one to end on, but you should never underestimate the importance of supporting yourself. Your health must always be a high-up enough priority for you, and whether that means saying ‘no’ to things that you just don’t have the capacity to take part in or by taking the time you need to rest and re-focus, you need to find ways to support yourself. For me, it’s been realising that I don’t always need to be such a ‘yes’ girl and that sometimes the best thing for me is to miss out on something, to make myself better for the next one. It’s about quitting jobs that are so toxic they cause constant flare-ups or dedicating Sunday nights to have baths and blog (hello). You do you has never felt so true.
The moral of the story is. No matter how brave, or how bold or how strong you are – having a strong support network around you is super important. Whether it’s two people or twenty, do not underestimate the strength of having people to turn to or learn on.
What I’ve been reading this week:
What I’ve been sharing online this week:
What I’m looking forward to next week:
What I’ve been listening to this week: