In April 2016 I was invited to be a keynote speaker at an IBD conference for patients. My first instinct, as usual, was to tell my own story. But the more that I thought about that, the less I liked the idea. My story is no more tragic or empowering than anyone else’s in that audience, and it felt borderline patronizing to tell a crowd of other patients about my IBD journey.
I mulled various ideas and even asked friends about the sort of topics they’d want to hear – topics that we haven’t all heard time and time again. Then it hit me: We spend so much time discussing what makes for a “good doctor,” but we rarely ever look inward at what makes us good patients. I broke down my speech on that very topic into four separate points.
1. Be an educated patientI can’t begin to explain to you how uneducated I was on the topic of IBD shortly after my diagnosis. I only knew one person in the world with IBD, and I had a skewed notion of what that meant, as well as what his life was actually like. After receiving my diagnosis, I took it upon myself to** research everything and ask as many questions as I could.** Today, I like to consider myself a heavily informed patient. I take time to learn about new research and to talk to other patients about their experiences in order to make sure that I know everything I can about living with IBD.
As an IBD patient, it is really important to know about your disease. I have met too many IBD patients who don’t know what their limitations are or what they should and should not eat. It is almost as if they are living in the dark about their own disease – and that can leave the door open to more harm coming to that patient. Good patients will educate themselves on their own disease, treatment options, possible complications, and how to successfully manage the disease while living a happy life.
2. Tell your stor believe strongly that IBD patients should feel empowered to share their stories with their friends, family, and even complete strangers.** Telling your story takes courage, but it is SO important.**
I have blogged about living with IBD for about six years now on Blood, Poop and Tears, and I’ve shared the good, the bad, and the humiliating with my readers. Some of the things I’ve shared on that blog are mortifying. But I believe that my own story gives other people hope and a sense of solidarity.
When we read stories of other patients experiencing the same struggles and triumphs that we do, it makes us feel less alone, like we’re navigating this path with someone by our side. A good patient is open to sharing his or her story because it helps other patients, and because by sharing we get the opportunity to raise awareness and to educate other people. Not everyone has to tell their story in the same detailed, scary way that I have, but we should all have a 30-second “elevator speech” about what IBD is, and how it’s affected our lives. The more we talk about IBD and work to erase the stigma, the easier it will be for new patients to accept and cope with a diagnosis._An example of an elevator speech: _ “I have ulcerative colitis, a disease of the digestive tract. Sometimes it makes it hard for me to eat certain foods and causes a lot of pain. Living with UC can be pretty unpredictable but I do the best that I can to live a happy and healthy life.”
3. Be an advocate
The phrase, "patient advocate” can be scary for a lot of people. Some take it to mean that your job is to educate everyone you know, advocate for other patients, be informed on all things IBD-related AND lead a perfect life without any mistakes. But for me, being an advocate is first and foremost about advocating for yourself.
When I was first diagnosed and spending a lot of time in the hospital, I didn’t realize the rights that I had or the options I could choose. I allowed doctors and nurses to treat me in ways that made me feel small and insignificant. As time passed, and I became a “professional patient," – meaning I spent A LOT of time in the hospital – I learned how to advocate for myself.
_Advocating for yourself means asking for fair treatment from medical staff, and voicing your opinions if you disagree with your care and treatment. _
It took me a long time to realize that I could say “no” to my doctors when I was uncomfortable with choices they were making. It took me even longer to really understand and accept that I deserved to be treated like a person and not like a number. Advocating for yourself means you’ve taken the time to educate yourself on your condition and your patient rights, and to ask for fair treatment.
4. Check your attitude
Before I was diagnosed, I was a bit abrasive in terms of my personality. I was sarcastic, blunt, and could seem intimidating – but really I was just insecure. All of that changed when I received my first chronic illness diagnosis. I was convinced that that diagnosis was the worst thing that could happen to me. I was wrong. The hits kept coming with another diagnosis, followed by a bunch of surgeries.
The old me would have taken it personally, as if the universe was out to get me. But post-diagnosis me decided to check my attitude at the door and take each obstacle head on, with an open mind and heart. I learned that by thinking positively, the human brain can create new pathways and actually work to make you a more positive person. You cannot always control what happens to you, but you can always control your attitude and your outlook. Everyone is allowed some grumpy or sad days, but I think being a good patient means looking for the light in most situations.
It took me a long time to be what I now consider a “good patient." I made a lot of mistakes along the way. I unknowingly passed along false medical information. I had a bad attitude. I took my doctor’s word as gospel. I spent lots of time feeling shame about my diagnosis. After all, we’re all human with ups and downs. But I truly believe that if we all become “good patients," we will make our own journey a little easier and maybe, just maybe, a little more enjoyable.
Jackie Zimmerman is a multiple sclerosis and ulcerative colitis patient and the founder of Girls With Guts. Since diagnosis, she has blogged her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community. In her free time (what free time?!) she spends time with her two rescue pups and plays roller derby. She’s online @JackieZimm.