Free Friday: My life and guiding with an invisible chronic condition

Written by Kat Slater

Whenever people get me talking, there are a couple of things that I always talk about: my family, books, and Brownies. I'm massively proud every time I hear "Tawny Owl" shouted at me while I walk around town. When my mother first took me to Rainbows all those years ago she could never have imagined the impact that guiding would have on my life. I've taken my Promise to heart and I don't know who I would be without it.

However, there is something else that also comes up in conversation and something else that my family wouldn't have been able to imagine when I was five years old and first nervously walked into a Rainbows meeting. I have a couple of chronic health conditions. Because who only wants one!

“Living with an invisible chronic condition sucks because people get bored of you telling them that you're "tired but fine" or "really don't have the strength to be here today". When it's invisible people forget that you have it, and when it's chronic people get bored of you having it.”

As a teenager, it was clear that I was struggling with depression, and that's hard enough by itself. But this post isn't about that. This week's Free Friday is about my chronic health condition which was brought on by stress and took two years to diagnose. This is how it began;

Pre graduation

My symptoms: I felt run down other people comments that I looked pale and was suffering from reoccurring headaches (which paracetamol didn’t ease).

My life: I was frantically writing or panicking about all the work I had to do for my dissertation. When I wasn't doing uni work, I was busy doing the tech for performing arts or helping to organise a show for singing soc or being Snowy Owl and completing my leadership qualification.

What I did: Nothing. I was simply too busy for my own health, so I just kept going. I reasoned with myself that of course I would be tired; it was my third year of uni.

Post graduating

My symptoms: I was still having headaches, and I still looked pale.

My life: I'd managed to get a volunteer role at the Commonwealth Games in Glasgow, a job for when I got back, a place back at my old Brownie unit and I was going to save up and then travel to Australia.

What I did: After prompting from my family, I took myself to the doctor (something that I hated) and they decided to rush through a blood test because I was "too pale".

Less than 2 hours after the blood test I got a call from a worried doctor who told me to come in immediately.

I discovered that my red blood cell count was about half of what it should be and they had no idea why. I was to go home and pack a bag for a hospital stay of an undetermined length, and they would call an ambulance to take me there that evening but I wasn't trusted to walk home because I would probably faint.

My family were on holiday but fortunately my best friend was with me and was an actual angel that night. Honestly, there are not enough words to describe how much she meant to me at that moment and I can never be grateful enough for her support. (I ended up just having an iron transfusion and getting out in time to see Doctor Who).

What followed from there was holding off my travel plans, with four or five months of tests to discover what had happened to make me dangerously anaemic. Eventually they decided it was Celiac disease, which my aforementioned best friend also had, so although I was shocked and it took a while to sink in, I already understood what it meant to be gluten-free. And yes, having Celiac disease sucked, but it was much better than all the other things they were testing me for. I booked my insurance and flights as soon as I got the diagnosis and went back to my life and plans, just without eating normal bread or pasta and so on.

As far as I was concerned that was the end of it, but while I was living on a remote island in Australia I became anaemic again. Knowing the symptoms this time it wasn't as bad, but it still shouldn't have happened. They knew the cause of the first time and fixed it. So I came home and went through more tests, and more tests.

My life became hospital, work, Brownies, sleep and repeat.

Guiding was what gave me strength in those moments. Yes, I had an unknown illness, but I was still Tawny and it didn't matter to the girls what else was going on in my life as long as I turned up every week. I missed more than one, but I just told the girls I was busy with work, as I didn't want them knowing about that part of my life.

Eventually I was given another diagnosis, a combination of "it's definitely Celiac disease, but it's also another thing called Ulcerative Colitis".

Ulcerative Colitis (UC) is similar to Crohn’s disease in that my intestines and bowel will just randomly swell up, which means I don't digest food properly, which then causes all sorts of other problems. This was early 2016, but they decided that I'd been suffering from this condition since uni, which I left in 2014.

This label of UC is never going to go away. It is always going to be there and be as big a part of my life as the Tawny Owl label. Except this one I didn't have a choice about.

This has a massive impact on my life, I've had to have awkward conversations with people at work about why I keep leaving for the loo, to the people who sit next to me when I take out all 10 tablets every morning and just start downing them as though it's normal (because for me, it is). I've had people look at me in restaurants or in public places when I was taking what felt like a pharmacy at every meal. I'm useless for every week out of 8 before I go back into hospital for my infusions, where they pump the really strong meds straight into me, which means we don't plan for me to be running the meeting that week because I can't promise I'll be up to it. I'm always in some form of low-level pain (and don't get me started about my period). I've got to be careful about every bug that goes around because I have to purposefully destroy my immune system so that it doesn't attack itself. That 24-hour cough/cold thing, yup, that'll knock me out for at least 3 days. On my best day, I'm at about 75% of where I used to be.


I've just recently been told that I'm in remission which means that I'm not showing any symptoms. Even without any symptoms, it is STILL difficult. I suffer from extreme fatigue, where I simply don't have the energy to do anything and sleep isn't helping. I get plenty of sleep but I'm still constantly tired.

But through all of this, guiding has remained the one constant. It was there before I was ill, through all the medication, and at times was the only reason I got out of bed. It'll continue to be there as I work out what being in remission means for me. If I go into a bad flare and the conversation about having surgery and just removing my colon and having a colostomy bag comes up again, guiding will still be there. And in that worst case scenario? I'm already planning to have a guiding cover for the bag, sew a couple of badges onto it, and make it part of my uniform.

The short of all of this is that just because I have UC, I haven't stopped being Tawny Owl and the person I was before I worked myself into two chronic conditions. It's taken 2.5 years to get on the right medication and to realise that although I'm never going to be the same person I was before, I'm still the person who made her leadership Promise on her birthday, who was proud to hold the flag at her sister's Promise, and who used to hide sweets in her Rainbows tabard.

If you take one message away from this post; remember, you're never too busy to be ill. Uni is great and hard work but you shouldn't literally work yourself into the ground.

Learn more about Ulcerative Colitis.

If you ever start to feel overwhelmed by your volunteering roles within Girlguiding talk to your local commissioner to discuss making your role more manageable.

For further advice and information about including all girls and volunteers in guiding contact the inclusion team at Girlguiding HQ.

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