Earlier this week Delaware became the 16th state to pass a restroom access bill. In Delaware’s version of the law, retailers with employee-only bathrooms must make them accessible to customers with celiac disease, Crohn’s disease, other inflammatory bowel diseases, or other medical conditions that require immediate access to a bathroom. Customers should be able to provide written proof if asked, such as a doctor’s note, and retailers could face a small fine if they fail to comply. This is big news and needed progress with an often-overlooked aspect of living with celiac disease and other conditions like it.
This is a side of my celiac disease about which I’ve seldom written-the social anxiety of ensuring immediate access to a public bathroom when needed, and the near-panic of what to do when one isn’t available. I’m not talking about anxiety and depression more explicitly linked to the physiological/biological impacts of celiac disease, but rather acquired social anxiety that’s the result of how being sick with something like celiac forces you to live your life.
This aspect of my life, which had become inappropriately “normal,” has been in the rearview mirror for years. But this week’s restroom access bill in Delaware struck close to home. Restroom access laws codify publicly a very private issue many of us face. As a subject of conversation, even among those with celiac disease or Crohn’s or ulcerative colitis, the topic is usually filed under the category of TMI-too much information. It’s an elephant in the room, seldom acknowledged explicitly but always lingering on the edges of the conversation, like a wallflower at a party no one wants to attend. Yet here we are, with the metaphorical bathroom door uncomfortably wide open for all to see. But I’m writing about it anyway, in the hopes that others who’ve battled this issue privately see they’re not alone, and that legislators in 34 more states will take up this issue and enact such laws as Delaware’s.
During the years when I was sickest, the frequent need for immediate access to a restroom – and the severe anxiety that grew along with it – guided (and hindered) my day-to-day life. I was forced to look into some sort of relief for my mental state as it got so bad at this point. I found a few sites that talked about CBD oil and it’s benefits for mental health in particular (such as https://cfah.org/best-cbd-oil/, which lists the best oils available) and I discovered it has been a life-changer for many others with similar conditions. Many people said it relaxes them and enables them to enjoy their life stress-free. I had a look for retailers and found some, such as Vibes CBD (https://vibescbd.co.uk/) and I was immediately hooked on finding out more. Vibes CBD and many others like it have actually come around in the past few years and legalizations of the drug are becoming more and more common in different places. It is so necessary for people like me to take advantage of this. And this goes for all the other solutions out there too, perhaps even therapy and also medication for this disease. You see at this low stage in my life, I constantly felt like my mind was a beehive and my heart was constantly racing whenever I went out. I couldn’t focus on enjoying myself because I was always worried about what would happen if I needed the loo! And that’s no way to live, is it?
On airplanes, whenever possible I’d book an aisle seat so I could make a quick exit. When flight attendants’ gave their pre-flight safety briefings about “keep in mind the nearest exit may be in front of or behind you,” I interpreted that as “which way involves the shortest shuffle to the lavatory.” If I had a middle seat, or worse, a window seat (two people blocking my access to the aisle!), I’d immediately start to worry. Would this be a flight on which I’d get sick? How many times would I force these kind people next to me to get up so I could run to the restroom? What if one of them falls asleep? Can I wake them, or could I climb over them?
I had anxiety about riding in someone else’s car. Would I make it to our destination? If I got hit by a wave, I’d grow silent, stare out the window, and retreat within myself with focused concentration-beads of sweat literally building on my brow-just trying to make it to wherever we were going.
Driving or riding in our own car was only marginally better. I’ve lost count of the number of times Kelli has sped down the off-ramp from a highway and turned into a random neighborhood, searching for the first gas station, where I’d be ready to unbuckle and run inside like the over-eager airline passengers in a race to be the first to unbuckle when the captain turns off the seatbelt sign. And there were the equally innumerable times when I was the driver, and I’d have to frantically pull over on the side of an interstate highway-because my body wasn’t going to wait for the next exit-grab a handful of napkins I always kept stashed in the glove box, and jump over the guardrail and into the woods.
Believe me, these are not proud moments, or happy memories, or easy to admit publicly. But they were a very real part of my life for at least two years.
And then of course, closer to the issue of restroom access bills for retail establishments, were the stores we shopped at regularly. I knew where all the public restrooms were in the big box retailers throughout our town. At various grocery stores, I similarly had the restrooms mapped out. I can’t tell you how many times Kelli and I would walk in and I’d peel off to make a beeline for the restroom, temporarily parting ways with a verbal “I’ll meet you in produce” or “I’ll meet you in aisle 12.”
Sometimes the need would strike mid-shop. I’d tell Kelli “I need to step away” or “I’m not doing well” and nothing more needed to be said. She knew what I was going through and where I needed to go. I’d return some time later, and she’d have her usual concerned, compassionate, understanding look on, simply asking me “How are you doing” but knowing the answer was “not well.” It was a kind of code talk between us for “do we need to leave right now and head home or can we finish shopping?”
I guess it should come as no surprise-to me or to you-that there now exist smartphone apps for finding public bathrooms. There really is an app for everything, it seems. But I’d argue that restroom access bills are far more important. When the moment strikes, those of us with celiac disease, inflammatory bowel disease, and other conditions don’t have the time to consult our smartphone app and navigate our way to a public restroom. Too often, we need that bathroom with the “employees only” sign on it, right here, right now.
Fortunately for me, those days have become a distant memory. For potentially millions of others, though, this is a big and serious issue with a comparatively easy fix. Sure, it’s uncomfortable to take this issue out of the privacy of the bathroom stall and thrust it into the spotlight. But if we can overcome our anxiety about publicly sharing our anxiety about access to bathrooms, we can all breathe-and sit-a little easier.
I don’t know why I am always so surprised to hear that others suffer the same feelings and anxiety that I do, but in this case your post brought back so many memories of the years before I knew that I had celiac, and dealt with terrible stomach issues. I thought I was the only one who was terrified of waiting for the commuter train to arrive since the Southern California train platforms don’t have any restrooms. So many times, I would park at the station and then dash back to my car to find a close McDonalds or gas station then drive back to the station to find I had missed the train. When I did manage to wait for the train, I counted minutes until its arrival. I was unable to chat with commuters or read the papter while I waiting as I was rigid with terror that someone would figure out my problems.
For over a year, I refused to drive the Los Angeles freeways during rush hour, because I was afraid I wouldn’t be able to exit in time if there were an emergency, increasing my commute by another 30-60 minutes by taking the side streets where there was better access to fast food places and gas stations. I built extra time into every trip I made, carried extra clothes in my car and told friends I would “meet them” as I was terrified of letting someone else drive so I wouldn’t be able to leave in an emergency.
Your memories of flying brought back so many memories of reducing my calorie consumption drastically three days before flying anywhere in hopes of controlling/managing any potential emergency and then refusing to eat normally until I returned home. This took the fun out of traveling, and created so much pressure I began having anxiety attacks making the matter worse. I cancelled a flight once solely because there were no aisle seats available.
I am so grateful for blogs like yours and the realization of how much better things have become over the last 10 years and for making me realize that many suffer the way I used to, and unfortunately still do on occasion.
I am glad that some states are more aware of these issues, and will eagerly follow this issue. Thank you so much for bringing it to my attention.
Thanks for taking the time to comment and share your powerful story. It’s amazing how parallel the experiences are, and how crippling the impact can be on everyday life, even though we don’t always recognize it in the moment, but only in hindsight.
– Pete
Thank you so very much for writing about this topic. I could have been the one to write it and unfortunately I went through it for over30 yrs before a smart doctor considered Celiacs. Never before did I think that there might be many people just like me, it was terrible. I had no idea some states had laws in place to help people like us. Thank you!!!!
It’s amazing how many of us could have written a personal story like this. It’s such an obvious issue when front and center, yet easily overlooked.
– Pete
Boy, that was like reading my own thoughts – in the stores, driving to events in other people’s cars (I have even asked to be let out and returned home), even leaving work because the restroom was tied up when there was an urgent need. Getting stuck in a traffic jam is a huge anxiety for me as it hasn’t turn out well. The horrible embarrassment I felt when my sympathetic (and very ill) brother had to pull off at every single exit while trying to get me to the airport in time to catch my flight home. He was a saint and unbelievably understanding. How humiliated I was when he was the sick one and I was the one that required being cared for. So backwards! Oh, and the biggie ~ not eating for fear of what will happen.
All of these fears and anxieties have kept me socially timid and self-exiled for 20 years. Happily, that is improving a bit thanks to folks like you and the people that share their experiences. It is good that we remove this subject from the TMI list. No, it shouldn’t be dinner-with-the-boss conversation, lol, but it also should not be in the (water) closet any more. It’s just a shame that it takes lawmakers to step in and offer assistance. Accessibility to restrooms should be automatically built into our infrastructure without even a question. One day.
I’d like to suggest trying the FODMAP diet if you haven’t already. I’ve recently discovered (through a bicycle v. car trauma) that I have celiac-and have for at least 24 years undiagnosed. As you can imagine, my gut is quite torn up (as many of you seem to understand). I started this diet at the suggestion of an allergist (I have Food Allergy Syndrome too-you can call me Canary. Canary in a Coal Mine) after testing for food allergies again and the tests were false (not uncommon). I decided to give it a try, because at this point I was so scared to eat, dropping weight fast, recovering from the injuries still and desperate for some normalcy form my body. I’ve been on the diet for 4 months and life is much improved (minus the cross-contamination and, it turns out, most pharmaceuticals need their ingredient list to be checked as well-since many are made with either wheat, potato, corn or tapioca starch.
Give it a try. It’s quite restrictive, so socializing just became that much more difficult (because avoiding onions and garlic AND cross-contamination is nearly impossible while eating out, I’m finding). It’d be nice if there was a GF community where we could all eat safely, use hygiene products safely, and rely on our physicians to know about things like medications with wheat starch when you’re celiac…one can dream, right? 🙂 At least I’m not alone.
http://blog.katescarlata.com/shop/
http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/
Ah, yes, the bathroom problem. I have Crohn’s and a wheat allergy, so I know what you’re talking about. Carrying extra undies at all times, with wipes and hoping you can get there in time. Thanks for writing about it.
If you haven’t published this article on Facebook, etc – you really, really MUST! It’s all so true, I spent my early years as a “colicky baby”, then it was “getting out of the washing up” (always straight to the loo after meals), then nearly 40 years in, some doctor decided it was IBS and I had the joy of crunching on charcoal tablets! The problem has always been with me and, despite a colonoscopy and assorted scans and echoes in my early 60s that showed no signs of coeliac disease, (and still the constant explosive diarrhoea) no treatment or dietary suggestions have ever been offered.
Then, earlier this year when it restricted my life almost completely to my home (on occasions I couldn’t even take the 9 steps to the loo, and then needed another shower) it eventually dawned on me that maybe gluten intolerance was the problem. Halleluja – no gluten – no problem! I still navigate by known lavatories, just in case. There have been a couple of episodes since going gluten-free, and I thank God it is an intolerance and not Crohn’s or Coeliac Disease.