When the anxiety and the auto-immune disease become one

Oh, me? Talking about being sick again — who’d have though?

I often try to think about what the worst part about having coeliac disease is. Is it the stomach aches? Not being able to eat anything I want? The constant nausea? The needing to double the amount of time you spend in the bathroom on any given day? Is it the panic I feel when I think someone is staring at how thin my hair has gotten? All of these things are totally valid and equally hard to deal with, but the side effect that no doctor or dietician could ever prepare you for is the anxiety, and oddly internal guilt, to throw into the mix.

I can count of 2 fingers the amount of restaurants I can go into and know that I won’t be sick leaving it. I’m not sure if I can even count one of them since I work there and so prepare all of my meals (or feel comfortable enough to strongly preface to whoever is. Apologies for any possible aggression ever in that area). It feels so debilitating to have to explain an allergy that a lot of people still don’t understand. It’s also embarrassing because yes, I know, I could have it so much worse. It often feels that if the potential of death isn’t on the cards for eating it, I will be okay. And I will be okay — just after about 5 days, a stomach ache and nausea that causes me to barely be able to walk, speak or stay awake, missing friends birthdays, work parties, losing €80+ in a days work, gigs, an unfathomable amount of time on the toilet, all of the colour from my body going, sweats, shakes, and nothing that medication can help. Is that enough? (Some of this happens even without eating gluten!)

Over the last year, I have gone on a holiday to Prague and Berlin and let me tell you, neither are very helpful in the gluten free area. I joked about it and it was fine, I got through but it was so frustrating to try and find somewhere to have really any meal — and no one wants to be the person to stop the rest of the group from having a nice dinner so you just kind of..sit there until it’s your time after that to find something. I’ve learned how to adapt with not much food at my disposal (which really doesn’t help the brain). Travelling to a new place is really exciting but so exhausting in the pre-planning. It’s spending more money to book on an extra bag, to fill that bag with stupidly expensive gluten free food and then spending half of your holiday time on yelp trying to find a restaurant and then translate everything.

I am incredibly hard on myself to take any time off. This comes from brain problems mainly, but also the physical side. There have been times where I’ve woken up in pain and taken the day off from whatever I was doing and there is nothing worse than the shame or embarrassment I’ve felt after realising later in the day that I would have been okay to make it through. I convince myself that I made up the pain but I didn’t. I have the diagnosis to prove it!

I think a lot of people with invisible illnesses can relate to the sentiment of overworking themselves. I don’t give any of my conditions the care they deserve because I don’t want to let them keep me back from anything. I will go to a new place and be hungry for a bit, or I’ll do a 2 week stint of 2 shoots and a weekend trip away in the middle and return like a zombie to yet, more work. I run myself into the ground and mentally I feel really powerful and energetic and like I can take on the world! But physically, I am in an egregious amount pain and just want to be able to have a peaceful toilet break without knowing I need to be somewhere in 10 minutes. But what if I miss an opportunity because I was in pain and then I’m okay? What if I’m wrong.

But that’s just it really — that’s what a flare up is. You’re in pain and then you’re okay. You just don’t know how long that is going to last.

But you were in pain. You are in pain.

What you deal with is tough, even if you do diminish it to ‘just an allergy’.

Rest.

Take on the world tomorrow.