World IBD Day | What Does IBD Mean to You?
Happy World IBD Day lovelies!
Although IBD forms a large part of my day to day, when the wonderful people at Pelican asked me to write about this one, it really got me thinking… I struggled to collect my thoughts and conjure up an answer. I think this is because living with an illness like IBD can be such a rollercoaster, everything can kind of turn into a blur.
Having suffered from symptoms for a while, I was diagnosed with Ulcerative Colitis aged 13/14 so really, I can’t really remember a time symptom-free and ‘normally well’ so to speak. So even now, when I say I’m well, I’m actually just my own new version of ‘normally well’ in the sense that my symptoms are manageable. I’m fully aware that I’m not ‘normally well’ because I still feel aches and pains and manage symptoms but to be honest, I couldn’t tell you what feeling ‘normally well’ feels like (If you know, you know). Anyway, this can sometimes prove difficult to explain or for other people to understand. What I mean though is that I think I struggled to answer the question because I’m so used to life with IBD, it is my normal.
I couldn’t sum my answer up in one word, sentence or even paragraph. But, there were lots of words that came to mind. So, I made a little video in response and I think it did a good job of summing up what IBD means to me.
For this post, I thought I’d elaborate on some of the words I chose to use in my video. I hope you benefit or can take something from it in some way shape or form whether that’s by resonating, learning something new or simply feeling less alone.
– lots of poo. Upon reflection, this one probably should have been toilets because I soon become best friends with the toilet, visiting her up to 20 times a day sometimes for hours at a time because it would be too risky to leave her side and even taking multiple trips through the night – dedication, hey! Except, these trips weren’t desired, usually they were make or break between managing to get to her or well, not. I became a master in other toilets too, their locations, busyness, loo roll supply but I guess it’s like having a best friend, although you have lots of toilet friends around and about, you always have that one that you’re fully comfortable with and can rely one. That one, usually being the one within the comfort of your home that’s always within metres reach. I also soon became very comfortable with that three-letter word that once was so embarrassing to speak. Comfortable (or at least, as comfortable as you can be) with speaking about it, showing it and even touching it when push comes to shove. Although I now have a permanent stoma, poo and toilets are certainly not off the radar, I just see and deal with them in a slightly different light but am nevertheless, always improving my expertise in local toilet ratings and instead, proudly fashion a bag of poo on my stomach instead.
I won’t lie, I still think blood is pretty scary and rightly so when it’s coming from somewhere it probably shouldn’t – never ignore something like this! Though, in 9 out of 10 toilet trips, blood actually became the new poo again, not just a bit of it… I’d often leave the toilet looking like a murder scene or, become part of that murder scene when I’d pass out on the toilet from losing too much blood sometimes leading to being wired up and receiving someone else’s blood – thank you all blood donors!
I also mean blood from another perspective though; constantly being pricked and having your blood taken for monitoring and testing and your body starting to look like a green and blue puffy pin cushion.
Something I was probably very naïve to for the most part of my IBD journey prior to undergoing it. I don’t know whether this is because everyone shied away from discussing it with me because of my age or, it was my own fault for not opening my eyes a little more and understanding the one way, downhill path that my health was heading down.
Ironically, despite it being something that has always been emergency and never out of choice, surgery has been a pretty significant game-changer within my personal journey on a couple of occasions.
This is something that I now largely affiliate with IBD, however, understand that it’s something that’s extremely personal to each persons journey. All I’ll say is that I wish someone had shown or told me that surgery isn’t always the last resort that should be dreaded or put off if it’s something that might positively impact your quality of life and wellbeing. Let’s just say I’m by no means fixed but, I definitely spend much less time visiting my previously mentioned friend, the toilet, and much more time living.
Ironically, a concept that the whole world is attempting (*attempting* because it’s bloody challenging!) to get to grips with at the moment! But, a concept that those of us with chronic illness such as IBD are all too familiar with. Involuntarily missing out on life is scary and very frustrating no matter what the plan, event or activity is/was. While everyone and everything else seems to continue moving around you, it can be hard not to get stuck in a dark place of frustration and isolation seeing it all unfold around you. It can not only make you feel isolated from the perspective of missing out but also from friendships, experiences, relationships or whatever it may be. It’s a weird one because even if you have a supportive circle around you, still at times, you can feel very much alone in the feelings you’re feeling and things you’re experiencing and it can be even harder to allow yourself to feel that way without feeling selfish – I get it. This too can feel like a bit of a rollercoaster as there may be one weekend that you can do something and the next, you can’t. To others, you may seem lazy, flaky, uncommitted amongst many other things and it can be difficult to explain or for others to understand.
I associate the grief of losing many things with IBD; time, friendships, relationships, organs, experiences, energy, opportunities…
I used to think it was silly and selfish to feel this way and bottle these things up from time to time but then I remind myself that it’s totally okay and normal to feel these things and to experience a sort of grieving process with them. Sometimes these feelings and emotions can crop up out of what feels like nowhere and that can be really frustrating too.
You know when you just feel so done with something and at your whitts end that you don’t necessarily feel anything apart from letting out a good cry? That’s what I associate with IBD. As well as the many tears associated with all of the highs and lows… actually, I’ve probably cried tears relating to all of the words I’ve chosen to use in this list both happy and sad ones.
p.s. it’s okay to cry!
Hurdles come, go and change during this journey. While one day a hurdle might be undergoing major surgery, the next might be taking a couple of steps. This can nevertheless, be pretty difficult to keep up with and to get your head around but, even though it may not feel like it at the time and it can occasionally be very tempting to give up, with each comes more resilience to overcome the next.
‘on the scale of 1-10, how bad is your pain today?’ – my least favourite question of all time!! I’ve experienced so much pain during my IBD journey both physical and, emotional. You soon realise that there are lots of different types of pain and discomfort – my pain threshold has certainly strengthened a hell of a lot over the years. You also learn a lot about your own body and begin identifying things it can cope with as well as things it can’t and soon find yourself becoming your own medical professional.
I think it’s easy and pretty self-explanatory from the other words chosen that I feel IBD is not only a physical rollercoaster but equally, an emotional one. Sometimes, this side of things is paid less attention of can be less spoken of but, it’s equally important to give this side of IBD as much care and attention too. I definitely used to think that I was silly for feeling emotional about the journey and certain things that I was going through but those emotions are so valid when you’re managing something like a chronic illness.
It can be frustrating getting new diagnosis, medications failing, not being able to do the things that you want to, experiencing new symptoms (the list is pretty endless) but generally, lots of feelings of frustration and ‘why me?’. These too are completely valid feelings. Definitely chat to somebody if you’re feeling this way or in fact, any of the things I’ve mentioned – it can be really difficult to but, speaking to someone whoever that may be is always helpful and feels like a slight weight off your shoulders if you’ve been bottling things up.
11. Loneliness (See 4.)
As I mentioned, living with illness such as IBD can be such a whirlwind. Although the first 11 words listed could be seen as perhaps a little negative (I try not to see things as positive or negative), in the long run, going through and coping with some of those things has opened my eyes to and taught me so much else. So, to me, IBD also means…
Without sounding big-headed whatsoever, I reflect on my journey as a whole sometimes and feel so empowered having managed to come through and continue managing it all. It’s mad what we can cope with when it comes to it! I also get a huge sense of empowerment from hearing other people’s stories and journeys too. And as a result, I feel really strongly about helping empower others to see the strength in themselves.
As a result of the lack of awareness that was around at the time of my diagnosis and growing up, I soon developed a significant passion for doing my part in contributing to developing and raising a better awareness of IBD within the general public and, for other patients as well as challenging some of the taboos and stigmas that come along with it. I actually remember being very early on in my journey with IBD and seeing something about world IBD day online not having heard of it before and just thinking that it was absolutely incredible there being such thing and seeing that there were others going through a similar thing to myself that were using their platforms to raise awareness and speak up – this really inspired me.
I have so much love and compassion for others now. I realise that although they may not be the same as mine, everyone faces their own challenges in some way, shape or form and everything in perspective. For example, your problem may not seem a big problem to someone else but if it’s something that means something to you then it matters. The same goes for other people’s problems, they may not be things you feel significant but, if it’s something that’s bothering them, then they deserve a listening ear and a bit of compassion shown.
Prior to my IBD diagnosis and journey beginning, whether I realised it at the time or not, I had a pretty privileged upbringing. I had a busy lifestyle, was involved in lots of sports and activities, went on nice holidays and did lots of nice things. It was only when the state of my health stopped enabling me to do some of these things was when I realised how lucky I’d been to have some of those opportunities and to be in a position of health that allowed me to do them.
Now, I have a whole new outlook and appreciation for life. I look forward to and appreciate some of the seemingly simplest things like going for nice walks. I no longer wish time away and appreciate things for what they are for and being well enough to be present (even boring lectures!). Beyond being busy and doing nice things, I just generally really appreciate waking up, feeling well and having a bit of energy to get up and do the day.
As a result of everything, experiencing and understanding the taboos, stigmas and barriers of living with chronic, invisible illness, I am so much more open-minded, considering, accepting and understanding of people for whatever it may be – never judge a book by its cover! I am so inspired by and accepting of others with varying experiences and journeys. Although it can still be a little difficult from time to time, I am also so much more accepting of myself and my own journey too (I think this is something that just gradually comes with time).
Whether it’s seen as a positive journey or not, having IBD is rather an adventure of discovery and learning in itself but that’s not what I mean in this case. Having IBD and dealing with all of its discussed hurdles, has given me a taste for adventure and urge to push to do, experience and see as much as I can with a great appreciation for having the ability do to those things. I am not a fan of being told that I’m unable to do something so always work to find a way around (safely, of course) or prove those wrong usually in name of adventure and awareness. I am generally just excited by anything that I’m well enough to do now.
Having the ability to do and achieve things stripped from me, has given me a huge motivation to push myself to do and achieve whatever it may be to my best ability wherever possible. When new hurdles are thrown in my way, whether they’re health-related or not, although they can be difficult, I’m lot more motivated to overcome them now because I know that despite how difficult something may be, there’s no reason that I can’t come through it because of the amount that my body has already handled.
Support is a big one. Without rambling too much, support in itself means lots of different things to me as a result of IBD. I recognise the huge support that I’ve received off a vast range of people in varying forms over the years whether that be a text here and there or those who have been literally been by my side the whole way. This includes friends, family, charity, healthcare professionals as well as the support and kindness from people that I don’t even know – how crazy and lovely is that! Whether I tell those people enough or even recognise things as support at the time, I am so so thankful for this always. As a result of going through this journey myself as well as receiving such support, I’ve also become a lot better at understanding others and recognising when they need that bit of support too.
I’ve always been a bit reluctant to ask for or accept help at times but having IBD has taught me that you can’t always be an incredible one-man band that copes with and manages everything alone so, have slowly become better at understanding when to accept help of various forms as well as being less proud about asking for a bit of help here and there.
I’ve felt and discovered such an incredible sense of community of people alike through having IBD. It’s so so nice to find people that just get you. Having always been too unwell to really be a committed member of something like a sports team, I’ve finally found that sense of community and it’s fabulous.
As a result of IBD and embarking on its journey, I’ve developed a huge resilience in many different forms whether physical or, emotional. If something is difficult or painful, whereas before I might have given up, now, I’m so motivated to push through. I also feel like I can just generally handle and cope with a lot more but importantly, identify what’s worth worrying over and what isn’t. I certainly have a new found perspective on a lot of things.
Finally, without seeming too cringe-worthy, for me, I think having IBD has helped me find purpose. Prior, I didn’t really know what I wanted to do and there wasn’t anything I was overly passionate about but now, as a result of all of the things that I’ve discussed, I feel a huge sense of purpose and passion to use my experiences, knowledge and skills in various ways to make purposeful and impactful change in a field that I really care about.
I feel like this has certainly turned out a lot longer than anticipated and apologies for blabbing at times but, I really hope my answer has resonated with or helped you in some way. I’d like to send everyone lots of love and support this world IBD day, during this time and in fact, always. We’ve got this!
P.s. I’d love to hear what IBD means to you?