One of the most frustrating aspects of living with IBD has been feeling out of control of my own body. With unexpected symptoms and the uncertainty of how the disease will progress, it often feels like I’m at the mercy of some invisible force. This sense of helplessness is especially prevalent when you’re newly diagnosed. I remember going through endless diagnostic procedures and trying different treatments, all while feeling overwhelmed because I didn’t fully understand the purpose or methodology behind them. This only made me feel more disconnected from both my body and my disease.
Over the years, as I navigated my own care and worked closely with various providers, I learned more effective ways to communicate and become an active participant in my treatment. A key part of this process was learning to ask questions that would make me feel more in control, rather than as though treatment was happening to me.
One of the things that has empowered me the most is having open, honest dialogues with my healthcare providers. When I was first diagnosed, I was hesitant to ask questions. I didn’t know what I didn’t know, and I was afraid of offending my doctors by questioning or doubting their recommendations. But the more I interacted with medical professionals, the more I realized that good doctors welcome these kinds of conversations. After all, managing a chronic condition is a collaborative process. Providers want to ensure that patients understand and agree with their treatment plans so that it’s effective. Sometimes, it just takes opening those lines of communication.
Here are four questions I ask my providers every time they recommend a new treatment or procedure. These questions help me feel more involved and in control of my care:
1. Why did you choose this treatment or diagnostic procedure?
Asking this question helps me understand my doctor’s thought process and can often lead to conversations about alternative treatments, as well as the risks and benefits of each. I like knowing my options, even if we ultimately decide not to pursue them. This also usually opens up a discussion about the science behind their decision. In some cases, I’ve even asked if they have access to any studies I could read that support their recommendation. I’ve been pleasantly surprised when providers have shared their entire thought process with me, including the research that informed their decision.
2. Are there natural or alternative treatments that you recommend in conjunction with other therapies?
This is one of my favorite questions. Many times, providers have excellent complementary treatments to recommend, especially when it comes to pain management. These discussions have led me to discover alternative solutions that I can combine with my prescribed medications, yielding positive results.
3. Do I need to obtain preapproval or insurance approval for this treatment, and who will be responsible for this?
This question helps avoid mix-ups with insurance and ensures clarity about coverage. I started asking this question after I showed up for a procedure and was asked if I had contacted my insurance provider for approval. I was bewildered at the time, but now, after years in the healthcare system, I understand how common this is. More often than not, the provider or office is responsible for obtaining approval, but there are situations where your involvement may be necessary. It’s important to know this upfront to avoid delays in care.
4. What have other patients experienced with this treatment?
Getting insight into how other patients have responded to the same treatment is incredibly helpful. This question often sparks discussions about potential benefits, side effects, and things to look out for or hope for.
I know it can seem like a lot to remember, especially when you’re not feeling well or are stressed about your appointment. Personally, I keep a list of questions in my notes app, which makes it easy to refer to them during my visit. If I need time to process the information, I’ll often follow up later via the patient portal. This gives me time to reflect on what I want to ask and can be especially helpful for getting detailed answers. I’ve also had providers send me research studies through the portal, which allows me to dive deeper into the science behind their treatment decisions.
When living with IBD or any chronic illness, it’s a huge win to feel like you’re regaining some control over your body and your care plan. Asking informed questions has allowed me to be an active participant in my care rather than a passive bystander. Knowing that my providers encourage this dialogue makes me feel infinitely more confident in my care team and their recommendations.
Remember, your healthcare providers are there to help you. They may not always offer all the information you’re seeking upfront, but that’s simply because they aren’t mind readers! Most doctors actually prefer patients to engage in a health dialogue rather than taking everything they say at face value. These conversations not only help you feel empowered, but they also give you the confidence to advocate for yourself when necessary.
Michelle Pickens, a.k.a. @crohnicallyblonde on Instagram, is a content creator, patient advocate, and freelance writer passionate about supporting individuals with chronic and invisible illnesses. Diagnosed with Crohn’s Disease in 2015, she shares her personal journey and insights on managing IBD, mental health, and motherhood. Through her work both on and off social media, Michelle offers resources, authentic stories, and community support for those navigating similar challenges.
Michelle Pickens
