Grace Warnock is only 10, but she’s perceptive. She easily picked up on judgmental looks from strangers when she would use public bathrooms for people with disabilities.

Grace has Crohn’s disease, an inflammatory bowel disease you can’t see from the outside. The condition can be painful and requires her to make a lot of bathroom stops. Instead of putting up with rude onlookers, she designed a bathroom sign that includes both a person in a wheelchair and a standing person with a heart, symbolizing people with invisible conditions. Then she took it a step farther. She launched “Grace’s Sign” campaign to get buildings near her home in Edinburgh, Scotland, to hang the signs up.

*Sign up for The Mighty Newsletter*

It worked.

The Scottish Parliament installed the signs on three of its accessible bathrooms.

“Using Grace’s Sign at accessible toilets on the parliamentary estate sends out a powerful message to others across Scotland that these toilets are there for everyone with a disability, regardless of whether or not it is ‘visible,’” Scottish Parliament member Iain Gray, who backed Grace’s campaign, told Edinburgh News.

Iain Gray MSP and 10 year old Grace Warnock, a school pupil from Prestonpans in East Lothian, unveil a new disabled toilet signs, designed by Grace.
Iain Gray MSP and 10-year-old Grace Warnock, a school pupil from Prestonpans in East Lothian, unveil a new disabled toilet signs, designed by Grace, which is now in place at the Scottish Parliament’s accessible toilets. Grace has Crohn’s Disease and, like many other people, uses accessible toilets as they provide the space and facilities to manage the requirements of her condition. Grace came up with the idea of this sign to show that people might not have a visible disability, but may still require to use an accessible toilet. Picture by Andrew Cowan/Scottish Parliament
Iain Gray MSP and 10 year old Grace Warnock, a school pupil from Prestonpans in East Lothian, unveil a new disabled toilet signs, designed by Grace, which is now in place at the Scottish Parliament’s accessible toilets.
Picture by Andrew Cowan/Scottish Parliament
Iain Gray MSP and 10 year old Grace Warnock, a school pupil from Prestonpans in East Lothian, unveil a new disabled toilet signs, designed by Grace, which is now in place at the Scottish Parliament’s accessible toilets.
“Using Grace’s Sign at accessible toilets on the parliamentary estate sends out a powerful message to others across Scotland that these toilets are there for everyone with a disability, regardless of whether or not it is ‘visible.’” Picture by Andrew Cowan/Scottish Parliament

Follow along with the “Grace’s Sign” campaign on Facebook.

RELATED VIDEOS


Inflammatory bowel disease (IBD) is a condition involving chronic inflammation of all or part of the digestive tract. The two major categories of it are Crohn’s disease and ulcerative colitis, and it affects an estimated 1.6 million Americans, according to the Crohn’s and Colitis Foundation of America. Symptoms can include diarrhea, abdominal cramps and pain, constipation, weight loss and more. To put it lightly, it can be a real pain — like an unwanted friend who just. won’t. stop. texting. you.

Of course, IBD can’t text the people who live with it, but if it did, it might look something like this. The Mighty asked people who live with the condition what a text conversation with IBD might look like.

Here’s what they had to say:

1.

"Cancel your plans tonight. I have a better idea, but you're not going to like it.
Hailey Remigio

2.

"You just ate chili? I shall rain hellfire down upon you! Mwahahahaha!"
Peg Danek

 

3.

"I noticed that you are having fun and enjoying yourself... I hope you know where the nearest toilet is in about 30 seconds."
Kristin Marie Kaskeski

 

4. 

"IBD: 'So, you have two big exams tomorrow morning? You don't feel like sleeping, right? Because I think I want to make multiple trips to the bathroom tonight." Me: 'Not tonight! Any night but tonight!' IBD: 'Maybe. We'll see how I'm feeling once you're finally asleep. ?"
Colette Manley

 

5.

"Hey yo, you knew better than to eat and then go out, right? Oh, you were hungry? Ha, so? Hope you remembered the 'poo-pourri' for my stench... but nothing is going to cover the echoing sounds of me in a public bathroom. Have fun tonight!"
Chris Dudley

 

6.

"IBD: 'So, heading out to a party and you thought I wouldn't want to join you? Dang, were you wrong!' Me: 'Oh, hey. Sorry about the miscommunication. You're not mad are you...? Oh, you're mad. Nooooooo.'"
Stacy Pottorff

 

7.

"Of course they're not talking about you. Getting up to use the restroom in public often takes half an hour and leaves you sweating from head to toe. Totally normal."
Shannon Aronin

 

8.

Text from IBD that reads "I know you're in the middle of Walmart and the bathroom is a mile away, but you better run!" With reply of running emoji

9.

We can do this now or... just kidding, NOW! Hope you've got some time and a high pain tolerance!
Michelle Oldenburg Fong

10.

"IBD: So for years your symptoms were like this and you managed me. We need to shake things up, what do you think? Me: ah wait, what? IBD: Done. *mic drop* Me: You suck."
Barbara-Seda Aghamianz

 

11.

IBD: You honestly think that just because that iced coffee drink is made with almond milk it will make me happy? Me: Well, it is supposed to be better for my diet... I thought you would appreciate the effort. IBD: You really don't know me at all.
Janet Mitchell-Wilson

12.

I really wish you would stop trying to eat. You know I start to get upset when you try to eat."
Tracy Augustine

 13.

"You tell me to go away but you keep drinking coffee. Mixed messages, girl!
Rebecca Brant

14.

"I've had you for 50 years and I ain't never letting go."
Therese Carnivele-Beavers

15.

"Ibs: You awake? Me: I am now."
Lee Anders

What would your IBD text you? Let us know in the comments below. 

Related: 17 Texts People With Chronic Illnesses Would Love to Get After Canceling Plans


 

Inflammatory bowel disease, otherwise known as IBD, is often misunderstood by those who aren’t affected by it. In fact, some seem to forget the “D” part of its name: disease. IBD is an autoimmune disease — meaning it’s not “just a stomachache,” and its effects can extend beyond the digestive system.

To bring some much-needed awareness to this chronic illness, we reached out the Girls With Guts community on Facebook, as well as our own Facebook readers, for the things people with IBD wish the rest of the world knew. Here’s hoping these shared “secrets” lead to greater understanding:

1. “It’s not just a bathroom disease.”

2. “I am always in pain, even if it doesn’t seem like it. I have to push it out of my mind in order to function.”

3. “When I say I need to use the bathroom, it means I need to go, like, now! If not, there’s a 99 percent chance I’ll end up pooping my pants.”

4. “My diet is my diet and it fluctuates [a lot]. Sometimes I can eat salad, sometimes I can only eat white bread. Leave me alone about it.”

5. “One day you feel so good, and the next day you could feel absolutely horrible”

6. “I am not my disease. While some aspects of life are harder, many of them are not, and I function quite well.”

7. “Pain pops up, and no, it’s not that I ate something ‘wrong.’”


via GIPHY

8. “There is no cure. Stop telling me to try diets that don’t help. Don’t tell me yoga cures all. Don’t tell me it’s all in my head. Don’t ask me if it’s the same as irritable bowel syndrome (IBS)!”

9. “It’s not my fault I have to cancel plans at the last minute.”

10. “Exhaustion is a huge struggle for me. It doesn’t matter if my inflammation is under control or not. It’s something I always struggle with. And it’s not something more sleep will fix.”

11. “Just because it’s not obvious (or I’m having a flare) doesn’t mean it’s not there and I’m not in pain. Have patience with all the ‘extra’ stuff that comes along. Just love me the same!”

12. “Yes, my stomach did make that incredibly loud noise. No, I am not hungry.”

13. “Sometimes eating is really sh*tty.”

14. “No matter where I go, I like know where the bathrooms are on the way there and where all the bathrooms are once I get there.”

15. “I don’t want to hear about some wacky cure you read on the Internet.”


via GIPHY

16. “People compliment my small frame all the time. I’ve even been called ‘lucky.’ But I have to force myself to eat anything. I feel weak; I hurt all over from exposed bones; my vitamin levels are abysmal. And if I do eat and I actually can keep it down, it can feel like acid is running through my body.”

17. “My joints are throbbing. It may be the disease or the treatment. But either way, they never get better.”

18. “No, I don’t need ‘more vegetables or fiber’ in my life.”

19. “It is an unpredictable autoimmune disease. It is not what you do or don’t eat, [and] it is not a lifestyle illness. It is just there, and it is a chronic illness. There is no cure.”

20. “Fatigue isn’t just, ‘Oooh, I’m tired.’ It’s more like, ‘I actually cannot find the energy to eat or move, [and] my body literally feels asleep.’”

21. “I worry about where I’m going to poop every second of every day (unless I’m at home).”

22. “There’s a reason I’m eating a ridiculous diet. It’s to help with the pain and bloating and constipation. And I really don’t want to discuss with you why I’m eating this way.”

23. “Don’t judge a book by its cover, or in our case, by how we look. We could be struggling a lot just to be doing what we are, so be kind!”


via GIPHY

*Some responses have been edited and shortened for brevity and clarity.

What would you add to this list? Share with us in the comment section below.

 23 Secrets of People Who Have IBD

If it’s not one thing, it’s always another.

In my experience with inflammatory bowel disease (IBD), that saying has proven true many times. If it’s not a fistula, it’s joint pain. If it’s not a hernia, it’s an abscess. I always bounce back, though, because what else can you do? With a disease as unpredictable as Crohn’s disease, there’s not much else you can do but dodge the bullets as they come. For three years, I‘ve been able to have a seemingly “normal” life. But not without that phrase lingering in the background, because, above all else, it still holds true. It’s always another. It’s always another.

I was diagnosed with IBD at 14 years old. When the disease struck, it struck quickly. Overnight my entire life had changed before my eyes. I’ve dealt with almost every complication the doctors tell you are “rare.” But I’ve survived — and to be honest, I’ve thrived. Here I am at 25, having had this diagnosis for over 11 years now, and while it has altered my life tremendously, it has also left me with a pocketful of humility and lessons learned. And for that, I am grateful.

But being diagnosed with something like Crohn’s disease or ulcerative colitis at a young age is difficult — more so, I believe, for a teen woman at that middle, awkward point of puberty. Imagine being hit with a diagnosis like this at the start of your formative teenage years, and even worse, before you had even begun high school. It strips you of an identity you hadn’t even started developing yet.

At the start of my diagnosis I dropped weight rapidly — 30 pounds in two weeks. You could see bones poking through my skin every which way. Everyone, including me, thought I was dying. When I was discharged from the hospital the first time, I was too weak to walk. People gawked at me as my dad carried me to and from the car for hospital visits until I was strong enough to walk again. I felt like a pariah.

I was already struggling with my outward appearance before I was diagnosed. My features were changing. I had just started to learn the concept of eyeliner. I was trying to mirror magazine covers. I wanted to feel pretty, and really at that age, it was all I cared about. In one fell swoop, I was hit hard with a dose of reality: IBD doesn’t care.

I’ve looked in the mirror at times and didn’t even recognize the person looking back. I’ve stood there, gangly and bony. I’ve stood there with puffy cheeks and a distended stomach. I have even stood there at my doctor-recommended “normal” weight and felt ugly, detached. I wanted to crawl in bed and hide. Over the years, I’ve learned to accept the fluctuations (and to keep varying sizes of clothes down in the basement). We, as women, already face so much pressure to look a certain way. As a sick woman, the weight of these expectations feels tenfold. Not to mention that my body is covered in scars. I’ve had more than 20 surgeries at this point. When I was a teenager, all I wanted to do was cover them up. I hated them. I was ashamed of them, my body. Now, at 25, I bare my scars wherever I go. They are the markings of strength and a persistence to fight that I didn’t even know I had in me. One day I just decided I can’t beat myself up over something I can’t control.

Two weeks ago, I had fluid drained from my abdomen because “scar tissue seeps,” something I never knew was a thing — until IBD. Having felt pretty good post-procedure, I woke up this morning with what could very possibly be my fourth fistula. Like I said, if it’s not one thing, it’s another.

Having IBD has helped me to realize your outward appearance isn’t everything. Before my diagnosis, I thought it was. After having mourned that ideal, I feel happier, more free. IBD has also made me more patient and more compassionate. Because I’ve learned to deal with one thing at a time with my disease, I use each obstacle as a chance to grow. Rather than fighting new problems, I take a breath and remember that at this point, I can get through anything. I’ve managed to take a phrase that has such a negative connotation and turn it into motivation to remain positive, no matter what comes my way. In doing so, I’ve become a stronger and more aware individual. So even though there’s always something, I’m always ready when that “something” comes.

alicia aiello featured
Alicia.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


I know this topic isn’t particularly new ground to tread. However, as I’ve personally been pretty unwell lately and have encountered almost all of the following phrases, I felt a wee refresher was overdue. For that reason, I’ve compiled a comprehensive list of the nine things I believe people with chronic illness do not want to hear.

1. “But you don’t look sick.”

(See also: “You look great! You must be feeling better!”)

The above phrase is often number one on lists of things not to say. I believe it’s the most infuriating thing anyone can say to anyone with a chronic and invisible illness. The frustration at these five words mainly stems from what I believe it insinuates, which is that you, as the patient, may be either lying at worst or embellishing the truth at best. After many years of suffering from Crohn’s disease myself, I’m still not even sure what the correct response should be.

It’s difficult when we, as patients with invisible illnesses, have to attempt to express how much unyielding agony we are in under the surface, when the outer shell looks like you’ve just stepped out of a Maybelline commercial. Pain and a plethora of other symptoms can strike at any time, completely unexpectedly in some cases, and without warning, so please don’t assume the packaging matches the product within without all the facts.

So what to say instead? How about asking about our disease if you don’t understand and would like to? Or saying nothing at all is just as good.

2. My friend/colleague/family member has it and she’s coping really well…/really badly…”

(See also: “You just need to learn how to manage it.”)

It’s a human instinct to share experiences and knowledge. Having things in common with others is one of the quickest ways to build a bond, so I understand why those who hear that patients have IBD (inflammatory bowel disease) have an urge to share what they know about it. However, in my experience, these nuggets of information from non-patients are often harmful to our states of mind. In the case of a comment implying someone they know is doing better than you, I believe it almost implies we aren’t quite trying hard enough. In the case of hearing horror stories about someone they know doing much worse, it can lead to panic, massive anxiety and uncertainty about the future.

So what to say instead? “My friend also has this. I’m always up for learning more about the condition so I can help you both!”

3. “You’d feel better if you just relaxed/took a holiday…”

(See also: “I read about some alternative therapies. Have you thought about trying…”)

There likely isn’t a treatment or potential medication left unturned in our quest for intestinal normality. But our illnesses regrettably don’t have a cure. Comments like “take a break” don’t always help. We’ll still have an incurable illness. We’re not trying to be negative, just realistic.

So what to say instead? “Wish you could get a break from your illness!”

4. “Why are you always tired?”

(See also: “Everyone gets tired.”)

Prolonged fatigue is a common symptom of most chronic illnesses. Fatigue isn’t “just” tiredness. It’s intense and unending exhaustion. No amount of sleep is often ever enough to shake it off. A nap or an extra hour in bed here and there just won’t cut it. When people question this utter exhaustion, it’s both upsetting and infuriating. We know everyone gets tired, but not everyone has everyday life to deal with and a chronic illness at the same time.

So what to say instead? “Anything I can do to lighten your load?”

5. “You just need to make some changes to your diet.”

(See also: “Should you be eating that?”)

Please don’t tell us what/where/when to eat. When we can enjoy a meal without a hint of pain or nausea, it’s like we’ve reached Valhalla. Food and drink and IBD patients can have a love-hate relationship. When we can eat, we can be utterly and almost instantaneously floored by incredible abdominal pain, or find ourselves getting up close and personal with the porcelain for the remainder of the evening. Concern about our diets is natural for those who care about us, but it’s important we don’t feel under scrutiny whenever we are eating in company.

So what to say instead? “What can I make you to eat?”

6. “It will get better, just be patient.”

(See also: “You’ll feel better after meds/a good meal.”)

Again, the incurable part rears its ugly head. We won’t ever “get better.” We may at some point feel healthier than when we’ve been at our lowest medical ebb, but time won’t heal IBD. It’s not a cold or flu where in a few days we will be fighting fit again.

So what to say instead? “I hope you start to feel a bit perkier soon”

7. “Are you in the bathroom again?!”

(See also: “Must be great to get some many extra breaks!”)

IBD patients don’t actually want to spend hour after hour in excruciating agony, clinging for dear life to a radiator or a sink or whatever is closest to hand. We aren’t actually hiding in there; we are forced onto the porcelain throne through no fault of our own.

So what to say instead? How about no comment at all? Or perhaps a gentle question as to whether there’s anything you can do?

8. “You’re too young to be sick.”

There is no age restriction on illness. According to the Crohn’s and Colitis Foundation of America, most people are diagnosed with IBD before age 30, but like other chronic illnesses it can strike any age at any time.

So what to say instead? “I feel for you!”

9.  “It could be worse…”

(See also: “You should consider yourself lucky.”)

Most people know that things could always be “worse.” I’ve never been sure what it’s meant to instill in the recipient: grace, embarrassment, silent reflection?

So what to say instead? Nothing. How about a hug?

woman next to roll of toilet paper with eyes closed

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Inflammatory Bowel Disease (IBD) affects an estimated 1.6 million Americans. These chronic illnesses, which include Crohn’s disease and ulcerative colitis, often come with symptoms like irregular bowel movement, fatigue and abdominal pain. IBD management can be challenging, and flare-ups have a tendency to unpredictably disrupt a person’s life. Still, people with IBD work every day to manage their condition.

The Mighty teamed up with the Crohn’s & Colitis Foundation of America to ask people what resolutions they’re making to better manage their IBD in the new year.

Here’s what they said:

1. “My only resolution is to get as healthy as I can.” — Sharon Maiman Rosenberg

"My only resolution is to get as healthy as I can." -- Sharon Maiman Rosenberg
via Sharon Maiman Rosenberg

2. [To meditate and journal] to reduce and control stress, exercise and [take] my vitamins every day… I am mindful that at any point my condition can change so I am doing as much as I can now.” – Tanya Whitner

3. “To speak up more with my doctors and push to get the things I need. To not be afraid if I disagree or to point out things that just don’t work. I went along with my previous doctor and believe I suffered way longer than necessary.” — Julianna Cleveland

"To speak up more with my doctors and push to get the things I need." -- Julianna Cleveland
via Julianna Cleveland

4. “To believe in myself and my life.” — Ella Hinton

5. “We are praying for remission in the new year.” — patriciabhood on Instagram

6. “To learn as much as I can about my disease.” — Mo Leisdon

"To learn as much as I can about my disease." -- Mo Leisdon
via Mo Leisdon

7. “To continue practicing personal development [and] mindfulness practices.” — Rachel Kling

8. “To be more mindful about what I eat, start a vitamin regimen and start gentle yoga.” — Lisa Brockway Middleton

9. “To pace myself when not feeling well.” — Nancy McConnell Johnson

10. “To try to be tranquil.” — Olga Pereda

11. “To listen to my body.” — Teresa Zale

 "To listen to my body." -- Teresa Zale
via Teresa Zale

12. “To feel better.” — Jenny Jean Philippe

13. “My resolutions are to watch what I eat and get in better shape. As much as I love certain foods, I know which ones trigger me, and it’s time to put my foot down and not cheat. Also, I know I’m coming up on needing surgery, so getting in good shape and strengthening my abdominal muscles for an easy recovery is a huge priority.” — Alison Lynn Sarver

14. “[To] work hard to further #ibdawareness, and find something to be thankful for each day.” — Colitis Ninja

15. “To continue to focus on what I can do, not on what I can’t.” — Kenzie IBD

"To continue to focus on what I can do, not on what I can't." -- Kenzie IBD
via Kenzie IBD

Images courtesy of Thinkstock.

Editor’s note: This story represents individuals’ experiences and should not be considered medical advice.

*Some responses have been edited and shortened for brevity.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.