Almost three months ago now, my youngest was diagnosed with severe ulcerative colitis. That’s an easy enough sentence to write and read, now, but gives little away especially if you don’t know the condition.
I paced the sixth floor of our major hospital while she had the colonoscopy until the GI doctor came out to speak to me. Anyone would know it’s not going to be good news seeing him coming towards you. That’s a talk you don’t want to have..
She’s so much better than she was that day. In fact 2012 itself can be left out of our collective memories. Such a sick little one she was… And yet this so much better, this not in remission yet and take some more heavy duty drugs to try and get you there, is not where you’d want your darling 21 year old to be. If there was a body part to give I’d give it in a heartbeat sweet one.
Today she roared. An activist is born. Any hint of embarrassment around all this squeezed out of her in response to an insensitive article from the other side of the world. Brought to her attention by a support group she belongs to – bringing that journalist world wide attention in reply.
Below is my daughter’s reply
Dear Kerry Dougherty,
Reading your article “Bathroom bill ends up where it belongs – down the drain” in The Virgnian-Pilot (January, 2013) I was conflicted. As someone living with ulcerative colitis I thought it’s great to see inflammatory bowel disease (IBD) being acknowledged and given some attention in the media. However, as I kept reading, I became upset and enraged. Eventually I just wished the article had never been written in the first place. Your “sympathetic” tone is very condescending to the IBD community and it is clear that you have not done any research. Your facts are wrong (Ally’s law was started by a woman not a boy) and you make people living with IBD out to be pretty much scam artists, even stereotyping us with thief’s or at least as un-trustable members of society.
Is it selfish to want access to the nearest bathroom when you’re crippled over with pain and only have ten seconds (rather than one or two minutes as you wrote) before your next bowel movement? According to you and some of your readers it is.
The biggest problems I had with your article is the overall attitude towards IBD that it sends to its readers. I understand that people see most of our symptoms such as constant, bloody diarrhea and gas as embarrassing, but it is through people with your power that this can be changed. I’m assuming that some of your readers have never heard of crohn’s disease or ulcerative colitis, as I hadn’t when I was diagnosed. Having a world wide audience (I believe you are an American publication, and I am writing this to you from Sydney, Australia), you have the ability to educate people and even influence their thought patterns with your words. I understand that the whole world isn’t going to become aware of or change their attitude towards IBD overnight, but reading some of the comments on your article, I know it is necessary to at least try and educate the world, even if it is one by one.
When I first became sick in March 2012, I was so ashamed of my symptoms that I wasn’t completely honest with my doctor. I am by no means holding you individually responsible for my or other IBD patients’ delayed diagnosis, but articles like yours are part of the reason IBD sufferers suffer in silence. If I had not been so embarrassed about my symptoms, I wouldn’t have become anemic to the extreme that required me to get blood and iron infusions in the emergency department. If only someone had said to me, “it’s ok to have these symptoms, don’t be so ashamed,” I would have sought out help sooner. Instead, your article tries to cover these up, “without going into graphic details, you get the picture.”
I am only 21, which is in the average age range of when people are diagnosed with IBD, and although I still see myself as young I count myself lucky that I was able to get through high school and teen years living a healthy life. Others are not as fortunate as me, even being diagnosed when they are still babies. Do you want them to grow up being outcasts having to stay home for their entire lives because others will shame them and turn them away from their bathrooms?
I am not saying that people with IBD will inconvenience businesses by always demanding access to their bathrooms. Often people with IBD only go out when they are feeling their best, and know where all public restrooms are at their destination several days ahead of their trip there anyway. Unfortunately though, sometimes an urgent bowel movement does come on, and we only have moments to react. It is times like these when compassion from strangers is really needed.
I want to take this opportunity to educate you and your readers that share your opinion on what it is actually like to live with IBD. We experience crippling pain and feelings of embarrassment every day. At my worst, I had to go to the bathroom around twenty times in one day. As much as our medicines help us, we worry what they will do to our other organs. For example the medicines i’m on now require weekly blood tests to monitor my liver and bone marrow, but they could also cause osteoporosis and eye problems. Apart from this there is the increased risk of cancer, and medical procedures such as colonoscopies, stool tests, endoscopies and more. My biggest worry at the moment is that I’ll stop reacting to my medicines and eventually need surgery, which for many with crohn’s and colitis happens immediately at diagnosis. And I haven’t even told you yet about the associated diseases such as mental health problems, and other autoimmune diseases, strain on relationships and stress surrounding eating and diet.
Let’s be honest, I see some pretty disgusting things living with inflammatory bowel disease, but nothing I’ve seen yet since my diagnosis has made me so horrified and disgusted as your article. We are all human, and we all have to go to the loo. Do you really have to make it embarrassing for the people that have to go more often than others, and have no control over it? Trust me, we don’t like it either, but if we can live with it, you should be able to too.