I’ve learned a lot in the 19 years I’ve lived with Crohn’s disease, but one of the most important things is getting the right medical team. While I was fortunate not to have experienced horrific consequences such as negligence or unnecessary surgery due to inadequate care, it became important for me to connect with professionals who support my needs and values. Here are some things I figured out that will hopefully help others in search of good care.
First, it’s OK to shop around! I’m a tall woman at 5’10” (178 centimeters). Shopping for clothes is challenging for everyone, but I need to make more effort and shop at several different stores to find pants in my length and size. It’s the same thing for people with inflammatory bowel disease (IBD).
Every person is unique. What may work for one person doesn’t work for another, especially when there are multiple medical issues involved. I met with a primary care physician whose expertise -- according to the clinic’s website -- was women’s health. I was hoping to work with her so that she could refer me to an OB/GYN for my Crohn’s-induced amenorrhea while being involved in my care.
She made some comments that were dismissive and off-putting, so I reported them to the clinic. I never talked to her again, and thankfully found someone who was more respectful and trustworthy with her approach. If you feel like your doctor isn’t the right fit, then keep looking until you find one that is.
Second, find specialists who are of a similar cultural or religious background. As a Muslim, there are some practices that are difficult for me to do. For instance, fasting during Ramadan is a big spiritual practice, but it aggravates my symptoms.
My former gastroenterologists who weren’t Muslim would say that my health was more important, but they couldn’t fully understand why I felt so guilty about it. I currently have a gastroenterologist who is Muslim and gets it.
It’s the same thing with my therapist. Former therapists were great for what I needed at that time, but lately, I’ve been wanting to focus more on cultural barriers as a Middle Eastern woman living with Crohn’s and to enhance my spiritual practice. My current therapist has been wonderful in navigating all of that with me.
Lastly, the health care system in the United States is difficult to navigate, so find a team of doctors and nurses who are advocates. I take medication every other month that is very expensive, and insurance often doesn’t cover enough of it, if they do at all.
It’s a medication that has to be mailed, and one of my former insurance companies would only cover part of the medication, which meant I had to pay $5,000 out-of-pocket for it to be delivered to my house. My doctor’s office attempted to work with patient assistance programs on my behalf, but nothing changed. After a while, we figured the best option was to have the medication sent to the office where I could pick it up. It was an unusual and inconvenient practice, in my opinion, but my team just wanted to help.
This isn’t a comprehensive list of what I believe are necessary characteristics in a medical team, and it’s different for everyone. Ultimately, the most important things are communication and trust, and that happens when you put in the work for your own care. It takes a long time to find a team that aligns with what you want, but it is worth it.
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