IBD and guilt: "but you don't look disabled"

I'm lucky enough to be to able to say that since being diagnosed in 2017 I haven't yet had to have surgery for which I am extremely grateful for. With a colonoscopy and tests done in February that confirmed my Crohn's to only be mildly active (woo), I've now had to look for a balance between feeling a lot more 'normal' yet also getting the previsions and help I need in case my condition worsened unexpectedly, but why do I feel so guilty about it? Is it because I mentally don't identify as disabled yet, technically, by my physical condition - I am? Why does getting help for an invisible condition bring with it a guilty conscience that maybe wouldn't be as prominent with a visible disease?

It's a complex subject and not one I can really provide a solid answer for but I'd like to try and help others understand why we might struggle to be open in the help we're receiving and whether or not this guilt is stemming from societies reactions or internally from ourselves.

PART 1

"I'm really tired today"

"Oh My God me too I was up till 3am with a migraine and my boyfriend wouldn't stop snoring and...and...and..."

Unfortunately, like everything in life, there is an element of competition when it comes to illness. As much as you ignore it, I think it's just become a part of our subconscious now in how we compare others and compare ourselves. How many times have we said something similar to the first line above and IMMEDIATELY regretted ever opening our mouths and, in that, the floodgates of who here is more tired/busy/stressed than every other person in the room. This has happened to everyone I'm sure but it has a slightly different impact when you're trying to explain symptoms or why you have to cancel plans or can't come into work that day. Sadly, that same repression is felt in that you sort of wish you never said it - except 'it' becomes mentioning your chronic illness. I think its instances is like this then, that makes us associate our illness with the everyday, the mundane annoyances of life: the 'normal'. When, in reality, our bodies are functioning at far from the normal capacity and we're having to work a lot harder to achieve this 'normal' pace everybody else glides along at (and the award for how-many-times-can-you-say-normal-in-a-sentence-goes-to-me lol).

This leads into this idea of fatigue as a side effects of IBD as well. The excuse of "I'm tired" is seen as...exactly that: an excuse. If you have Crohn's or Colitis and you've ever had to cancel plans with people you love because of being too damn exhausted for whatever reason - I won't bore you with the different types of fatigue or all the things that can cause it but it's a lot and it's ANNOYING - then you do feel like you've let them down and that it sounds like such an excuse even though it's not. We feel GUILTY for it. Even if those people are incredibly understanding of it.

PART 2

"But you don't look ill"

"Are you accusing me of faking my illness or asking me what concealer I use"

This is actually a tweet I saw from someone with Crohn's and it made me laugh (to tell the truth I was lying in bed and as I laughed I dropped my phone on my face - hence why I remember it well enough to put in this post). It's so true though!! Although IBD is chronic - meaning it's a lifelong condition - most of the time we look really healthy in our face and even in our bodies when we might really have scars or ostomy/ileostomy bags hidden underneath clothes. There's not really a way to get around this because to state the obvious: we all want to look our best and no one wants to attract attention to an illness they have. It's so easy to hide! But is that half the problem? Are we making the effort to hide our condition, whether it be under a t-shirt or just with a smile and a good foundation only without realising that by doing this we then feel guilty and get hurt when people don't understand it as much? Just food for thought.

I recently went to my old school and sixthform (for reference I only left in July 2018 I'm a baby at uni) to try and get some sponsors for my 10k Walk It Crohn's & Colitis event and THE AMOUNT of people who had absolutely no idea why I was fundraising or that I had Crohn's actually quite surprised me. I spent up to 10 or 15 hours a week with these people and yet they didn't have a clue. If you think about it though, unless I helped them understand they wouldn't have known because although I lost a lot of weight before and during my diagnosis, I still looked like any other person in that sixthform. On the flip side, as I was walking into the building a lady I had never met saw me and my sponsor sheet and said "Oh, you're running for Crohn's & Colitis UK that so lovely to see, I have Crohn's!" Would I have guessed it? Never. Would she have told me if I wasn't holding that sheet? Never...

Why do we feel judged? Maybe, it's because the condition still isn't understood very well. A lot of people just think we get cramps and its all about the toilet business and so the other effects aren't deemed as 'illness related' but having IBD can affect everything from your blood or your weight to your mental health or self esteem. Maybe the world is just rather arrogant and believes what it sees at first glance. This has been a problem for so many people who use disabled toilets and its so sad that of all the people get in touch with me about this post and feeling guilty, 99% is in regards to getting dirty looks when using a disabled loo. We are fully entitled to as technically, as I said before, IBD is a long term health condition and a disability. When you join Crohn's & Colitis UK you get sent a RADAR key that unlocks any disabled toilet in a public space and for so many people to be able to use a toilet right then right there when you need it can save a great deal of stress and ordeal they already have to put up with day to day...but imagine utilising that in a personal emergency among its demoralising effects, only to walk out and get given a dirty look or worse, a nasty comment about using it when they don't realise the circumstances. C&C UK launched an entire campaign in aid of this called #noteverydisabilityisvisible

(linked - please go have a read if you have a spare two minutes which I'm guessing you do since you're here haha) and it's such a brilliant but needed movement to help awareness of the condition because really a lack of awareness is what causes us to doubt our own importance alongside physically obvious conditions, in my opinion.

This doesn't just cover people who have undergone surgery or in the midst of a bad flare up either. You are entitled to medical services, mental health help, educational provisions, the use of disabled toilets, emotional support and the right to not feel the need to hide your condition to comply to societies standards and taboos. I have a confession: I own a RADAR key and I have never used it because I didn't think I was ever "ill" enough to need it. I suppose I placed those with another medical condition over my own, perfectly legitimate medical condition. I have even stood in a queue for over 10 minutes when an accessible toilet was right in front of me and I had my key. Why? For fear of judgement.

PART 3

"Not every disability is visible."

To summarise, there are a whole host of different inputs that might be making us feel guilty about getting the help we need for an invisible illness but, in reality, it's something that is going to be managed and part of us for quite literally the rest of our lives so it's about damn time we started accepting and embracing anything that can help us live as actively and fabulously as we can! *insert some sort of sassy finger click because we got passionately camp for a second there*. I won't pretend to know everything about IBD and I can't speak for everyone but I wrote this for me personally and I think it's incredibly important to remember this next time we feel guilty about using an accessible toilet/getting extra time in exams/cancelling plans to rest/feeling healthier but still needing help or emotional support...

Every case of IBD is entirely different and you can't compare your condition to somebody else's. You deserve the help that you need to have a better quality of life even if you look like the most put together and healthy person in the world. No one knows what you're going through unless you share everything with them and so other people's opinions about your body, actions or illness DON'T MATTER.

I'm actually starting new medication soon for my Crohn's which is both exciting but makes me a little nervy but I can tell you right now there won't be an ounce of guilt in me making sure I have what I need to make my summer incredible this year.

Thank you so much for taking the time to read this and I would also like to say a special thank you to anyone who got in touch with me on Instagram when I reached out asking for personal stories or experience with guilt and IBD - I hope this has done some justice. If you do have a minute, I would love to hear your thoughts on this and would be so grateful if you could share this post in some way to help spread awareness of the condition and the campaign.

XXX

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