Ally Bain (of Ally’s Law) Chats with Caring for Crohn’s About Her Journey

November 7, 2012 at 5:04 pm 1 comment

Ally Bain is a rock star in the Crohn’s and UC world. We all know her for her work on creating Ally’s Law, or the Restroom Access Act, which allows Crohnies access to employee-only restrooms during a medical emergency. She was even named one of Glamour magazine’s Top 10 College Women last year! Well, aside from working on getting that law passed in several states around the country, Ally is a recent college graduate who is in the process of applying to law school to study civil and disability rights.

Ally recently chatted with me about her Crohn’s journey. Check out her interview below!

Caring for Crohn’s: When were you diagnosed with Crohn’s Disease?

Ally Bain: I was diagnosed with Crohn’s disease in August 2001 when I was 11 years old.

C4C: Tell me a little bit about your 11 year journey with the disease.

AB: When I was first diagnosed with Crohn’s disease, my case was relatively mild. However, I began to have a lot of flares in eighth grade and at the start of high school when I stood about 5 feet tall and weighed no more than 67 pounds. Due to being underweight, many people thought I had an eating disorder, and some even told me so. No one knew how sick I really was, not even me.

A couple months before finishing my freshman year of high school, I had emergency surgery due to a perforated colon. I woke up the next morning with a temporary colostomy, which allowed my intestines to heal. The surgeon told me that had I not had the surgery, I would have died within 24 hours. Soon after the surgery, I realized that my pediatric gastroenterologist was reactive rather than proactive in my care, so I transitioned earlier than usual to an adult gastroenterologist because I knew, like all patients, that I needed quality medical care.

After eight months, I had a second surgery to reverse the colostomy. Almost a year after my second surgery, I had a third when I was a junior in high school to remove scar tissue.

Since my three surgeries in high school, I have been in remission. I know this is due, in large part, to the medication I have been on for ten years as well as due to my medical team, strong support system, and belief in turning negative situations into positive outcomes.

C4C: How did Ally’s Law come about?

AB: Ally’s Law, or the Restroom Access Act, states that anyone with a medical emergency must be allowed access to an employee-only restroom. As of 2012, it has been passed in 13 states, including Colorado, Connecticut, Illinois, Kentucky, Massachusetts, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Washington, and Wisconsin. It is also pending in several more and is being considered in other countries.

The idea for the legislation came about when I was 14 years old. It was after a store manager at a large retail store outside Chicago denied me access to the employee-only restroom despite the establishment not having any public facilities. The manager said he knew about Crohn’s disease but claimed he was making a “managerial decision” when he continuously denied me access. Crying and bending over in pain, I knew I had a matter of minutes to find a restroom but felt helpless. Sure enough, my body gave in, and I had an accident. I left feeling ashamed and
humiliated.

Walking out of the store, my mother promised this would never happen to me or anyone else again. I agreed and, soon after, knew just who to call: my local state representative who I had met just two months earlier while on an eighth grade class field trip. Within months, she and I were putting together a bill for Illinois. At the age of 15, I traveled to the Illinois capital with my mother and our representative. I testified in support of the bill in front of a committee where the bill passed unanimously just as it later did through the Illinois House and Senate. Former Illinois Governor Rod Blagojevich signed the bill into law in August 2005. Ally’s Law, or the Restroom Access Act, became the first of its kind in the nation. Due to people’s efforts across the country, other states have passed the legislation as well.

C4C: What is it like to be young and a high profile name in the Crohn’s world?

AB: It is empowering and enlightening to know that one voice can really make a difference and that a group of people can influence positive change. I consider the passage of the Restroom Access Act to be an advocacy effort involving a group of people, rather than an individual person. I know that the legislation would not be as successful as it is without the people across the country who have shown their support in a variety of ways, including writing letters, sending e-mails, making calls, meeting with their legislators, and testifying.

However, not everyone is ready to speak out, and those people may rely on others to speak on their behalf. In talking about my humiliating experience, I felt I was also speaking for hundreds, thousands, or millions of others who were either too afraid or not ready to speak out about their personal challenges with a chronic medical condition or disability.

I cannot be more grateful for how much support people have shown for the legislation, and I always enjoy hearing from people who are interested in taking part in the legislative process as well. I feel fortunate for having the opportunity to realize, recognize, and embrace my passion for civil and disability rights, and I hope to continue these efforts as I apply for law school and subsequently start my career.

C4C:Who have been your primary caregivers during your battle with the disease?

AB:Throughout the 11 years that I have had Crohn’s, I have understood the importance of having a strong support system, which includes the people I can trust with my care. In my case, my primary caregivers include my parents, my gastroenterologist at the University of Chicago, and his medical team. However, my support system also extends to other family members, friends, neighbors, professors, co-workers, advocates, and more.

While it is important to find people you can rely on when you are sick, I have found that it is also essential to become your own advocate and be resourceful. When you take control of your disease and also find a network of supportive people, the disease becomes that much easier to overcome.

C4C:Has having Crohn’s made it difficult for you to date or be in relationships?

AB:When I was at my sickest in high school, it was difficult to put effort into a relationship because I was so focused on either getting out of a flare or recovering from surgery. I relied heavily on my support system and realized that good health came first. So, it was tough to date at that time. However, while I have been in remission, my Crohn’s disease has not held me back as it did in the past, and I have been able to manage relationships better than I did before.

C4C:How do your friends handle you having the disease?

AB:I make sure to surround myself with friends who are genuinely and unconditionally there for me. However, in the past, I found out the hard way that not everyone is there to support you when you are at your sickest.

In high school, my group of closest friends became my biggest bullies. They claimed they were sick of me being sick and that I was putting my disease on a pedestal. They stopped talking to me at school and no longer made plans to see me after school or on the weekends. Sometimes, when I would pass them in the hallway, they would grab their stomachs, laugh, and say, “Oh look, I have Crohn’s disease.”

Since then, I have found real friendships. Some of these friends also have Inflammatory Bowel Disease and others do not, but the basis of our friendship is a mutual respect and showing of support towards the other person.

C4C:What is the worst thing someone has said to you or asked you about Crohn’s?

AB: In high school, my weight often fluctuated depending on if my Crohn’s was flaring or if I was taking steroids. When I weighed less than 70 pounds, people assumed I had an eating disorder. One person even told me that I looked like a Holocaust survivor because of how skinny I was and how sickly I looked. That was one of the worst things someone has said to me about my Crohn’s.

Several months later, after I had been taking steroids to treat my Crohn’s post-surgery, I gained a ton of weight and my cheeks swelled due to the steroids. Some of the same people who, at one point, thought I had an eating disorder were now calling me “chipmunk cheeks.”

Although it was difficult to go to school and have ignorant people judge me based on my appearance, it emphasized the importance of spreading awareness and educating others. With more education comes more understanding, and I have made sure to take every opportunity to better inform others.

C4C:What would your advice be to someone just diagnosed with the disease?

AB:While the disease may seem debilitating at times, and may feel impossible to overcome at others, there are a variety of reliable resources and people out there for guidance and support. You are not alone with this disease; there are an estimated 1.4 million Americans with Inflammatory Bowel Disease as well as millions with other chronic medical conditions.

Each of us has something we are hiding – often a critical part of ourselves that causes shame, yet a chronic illness like Inflammatory Bowel Disease should not be a shameful secret. Publicizing the condition removes the stigma, and as people become more educated, they grow more empathetic.

So, use your voice, share your story, seek out the best resources, educate yourself and others, and build a strong support system. These are all important elements in overcoming the disease, as are knowing that remission is achievable and that finding quality medical care is essential.

As difficult as it may be at times, try to always take a negative situation and turn it into a positive outcome. Take advantage of good opportunities and never let your illness define you.

Thank you to Ally Bain for taking the time to chat with me and share her great story! You can follow her on Twitter at @Allys_Law.

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What Not to Say to an IBD Patient or Caregiver The ABC’s of Crohn’s Disease & UC: “F”

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