This week (Oct 17-23) is dedicated to Invisible Disabilities.
The disabilities you cannot see, and there are several. from Diabetes to Chron's and everything in-between, in front and behind. The type of disabilities that people tend not to believe you about, because "you don't look sick". The disabilities that make people give you dirty looks if you don't stand to give your seat to an older person on public transport, because your arthritis flare up isn't visible to them. Those illnesses that cause you to gain or lose weight and people feel it's their right to comment on how fat or slim you've gotten, or tell you to go to the gym, or just eat a little more.
I didn't realist that Celiac's was even on the list, until I started filling out job applications some time back. The applications usually give you the option not to divulge if you have one, but they also give you a list of possible disabilities (not limited to, but just some are noted). I was surprised to see Celiac's on there, because it's a thing people look at you oddly when you mention. Speak about not eating gluten and people think you're on a fad diet and roll their eyes at you.
You don't have to have Celiac's to be sensitive to gluten by the way.
What is gluten? It's a protein found in some grains(wheat, rye, etc), that for certain people, is not possible to digest, it is not a food allergy. I, and many other people say it's an allergy, because it's a lot easier to say than try to explain, and people tend to hear "allergy" and take that seriously.
So why do I wear a mask from my apartment to take the trash out of to go to the laundry room? Because in my building the only people who seem to care about masks are me, the Landlord (who doesn't live here) and the Super. If I bump into a neighbor coughing droplets and end up with The Ronas, it probably won't end well because I'm immunocompromised. But "you don't look sick" right?
Not everyone is born with this drama, for some people it comes at them hard later on in life, some people have always had it but didn't know, and doctors never made connections to it, even with all the other illnesses in their medical history. This is tricky to diagnose, from the testing, to the fact that people who have this tend to not always have the same symptoms.
What I mean is, if two people have a cold, you would probably be able to tell because there's a cough, sneeze and runny nose right? With Celiac's I can have a rash, joint inflammation and issues with balance, someone else might have brain fog, digestive issues and something else altogether.
Over the years I've had "friends" tell me that it's all in my head, that I used to eat XYZ thing before, so why can't I just eat it now, or that this just suddenly happened to me, and a whole host of other lovely little tings that came from their medical degrees from the university of youtube.
My particular experience is this: I was the kid who didn't like ice cream, not because I didn't like it, but my mother will tell you that my line after eating half a scoop was "this is too rich", and it would then be passed to her or my sister to finish. At 6-7-8 years old I couldn't explain it any better. The richness, the heaviness that made stomach upset was actually my body reading an enzyme in dairy as gluten and reacting to it. I had no clue then, no one did. I've had arthritis since I was under 10, if you go through my medical history, everything adds up, nobody made connections, because it wasn't really something that was known about.
I eat cheese, I love a good crumbly British cheddar, but in order to eat the cheese, I swapped to non dairy milk, I use coconut oil in place of butter. While I eat dairy, it's in limited portions, because I know what it feels like dealing with the aftermath and I try to be good with it.
If i come to your house with my own food, cutlery and eat from my container, don't be offended. First of all I'm an introvert, and also I don't generally like people enough to go to their houses, so that's already saying a lot. But it's for a couple reasons.
1. I don't want anyone going through the trouble to make a specific meal for me.
2. I don't want anyone feeling badly if I still end up sick after they went through the trouble.
You can be the cleanest and still have particles of wheat, gluten etc on pots, pans and plates 24-48 hours later. And that means cross contamination. Depending on your level of sensitivity, this will not affect everyone. I've had experiences with CC that I never want to repeat again, so it's generally safer for me. This makes ordering in, and eating out incredibly difficult and frustrating. If you're traveling, ask your friend with specific food allergies about food, trust me they will know, they have done everything from google restaurants, to reading through yelp reviews, because they have to.
Yesterday I was out running errands and I was near a place that I have safely gotten food from several times. It's a mom and pop operation, and I chat with the people there, it's that kind of small business. I always have the same thing. I look at the menu every time, but I always order the same thing. I order the exact same thing because I like it, and it hasn't ever made me sick. While they are a dedicated GF and Vegan establishment, and they generally make their burgers themselves, I'm assuming they "chik'n" is bought. It is GF because I didn't throw it up, so I know that. I think that that chik'n was probably made somewhere that also processes items with wheat. I say this because by now, I know how my body reacts to different encounters with gluten.
I tried this new sandwich (yolo), and after eating it, my stomach did a little twitch, but I chalked that up to late eating. I was fine. However as the day progressed my face started feeling tight. You know when your skin starts drying out how taut it can feel? Like that, just x 100. The the irritation and itch, my whole body felt like things were crawling under my skin, that itch you can't ever seem to reach. Of course I kept pawing at my face and by that time it dried out so much it felt like I had scales, and got red and blotchy. Today it's not as red, it's still red, it's still dry, no amount of vaseline nor moistures will fix this, so suggestions aren't being taken right now, thank you. This is a wave I'll be riding out for at least another week. I won't even post pictures of what my face looked like last night and today, because you shouldn't have to see that in order to have empathy.
So I tell you that story to say, when I ask in the restaurant what is in the dish, when I bring my own food, when I decline an invitation to eat out, or come along but order nothing because I've eaten at home first, it's because I'm trying to avoid situations like this. And just because you haven't experienced it, or can't see it or don't think I look "sick" doesn't mean that I don't have an illness. I understand that we humans tend to have issues with empathy if the thing never happened to us personally, but try to be kind. People are struggling every day with illnesses that you cannot see.