Finding Someone Who'll Take Your Pain Seriously
On average, it can take 7 to 10 years for a patient to be accurately diagnosed with irritable bowel syndrome (IBS), according to Monika Bettney, a specialist gastroenterologist and women's health dietitian. We can all agree that this statistic is just unacceptable.
Anyone who suffers from chronic pain and struggles to find their "why" knows the hardest part of the entire process is finding a doctor who takes your pain seriously.
Feeling ignored is painful
Chronic pain is invisible, which often means people don't believe it's real. With conditions like diabetes, asthma or even allergies, our friends, family, partners and doctors can more easily see what we're going through and, hopefully, want to help improve our quality of life. Unfortunately, most chronic pain is hard to diagnose because it can't be adequately recorded in regular diagnostic testing, such as bloodwork, magnetic resonance imaging (MRI) or an electrocardiogram (EKG).
To better understand that feeling and how common it is for patients to struggle with being taken seriously, Nicole Hemmenway, a chronic pain survivor and CEO of the U.S. Pain Foundation, emphasized, "It's essential to realize you are not alone and that your pain matters. Once you have that basic understanding—which can be harder to get to than it sounds—you can begin to better advocate for yourself and your needs."
Document, document, document
It can be frustrating as we often feel like we're going through an endless stream of doctor visits and constantly coming up empty. Rather than despairing, help your doctor by accurately documenting your symptoms.
Hemmenway recommends being descriptive: "You have to really hone your ability to talk about your pain. It's such a personal, emotional thing to discuss, and sometimes we don't do as good a job explaining it as we think we do. Try to figure out a sentence or two that helps really describe or summarize what you're going through that you can use with loved ones and providers alike. Metaphors can be helpful, like, 'I feel like I have the flu, 24/7.'"
Practice communicating your symptoms, so you can create a concise summary of your most impactful issues.
Precision when describing location, type and level of pain can also make a difference, particularly to whomever you may get referred to. When documenting your symptoms, it's essential to consider every aspect of your day, since everything from your menstrual cycle, diet, and exercise and drinking habits to how you manage your psychological traits (such as mood) can impact your pain levels.
Of course, while pain is not all in your head, your chronic pain could negatively impact your mental state, and vice versa, causing a perpetual feeling of depression or stress that can intensify your pain.
For example, while I've changed my diet and lifestyle to treat my fibromyalgia, if I experience more stress than usual, I know a flare-up is possible, so I will adapt my schedule in preparation. I might cancel plans, make temporary dietary changes or seek support from my partner, so I can decompress.
Not every doctor is the same
Not every doctor is going to miss your symptoms, so finding the right one will make a tremendous difference in managing your pain. To be taken seriously, Hemmenway recommends treating your appointment like a business meeting: Have a list of questions prepared, bring your documentation and read from your journal so your doctor can see the physical proof of your pain. In my experience, it's hard for a doctor to brush off your ailments when they see a dated, recorded document of your pain for the last few months sitting on their desk.
The last four years of seeking answers for my pain have taught me there are very clear differences between a physician who listens and one who wants to get you out the door. If it seems like your physician is brushing you off, insist on seeing a specialist, who will likely better understand your symptoms.
This is where your documentation can help. If possible, have three months of symptoms recorded and try to identify patterns in the pain you've experienced before you see your physician, as this will help your doctor to determine which specialist will work best for you.
Practice communicating your symptoms, so you can create a concise summary of your most impactful issues. Typically, once you get to a specialist, they'll be more familiar with what you're experiencing and be more adept at listening and responding with regard to managing your particular pain.
"Repeat what you hear," Hemmenway continued. "Miscommunication is a problem in any setting, but when it comes to your health, you definitely want to make sure you understand your doctor's recommendations. That's why I always repeat what they say back to them."
The truth is hard to hear
Once we follow every lead, visit several doctors and hear their diagnosis, the answer can be hard to accept. We know deep down something is wrong, and this is why we put ourselves through the struggle of undergoing the medical process. But when we learn that we have a chronic illness and that this pain is the result of an average day living with our disease, it can be a major blow.
But learning to communicate our symptoms, documenting our discomfort and finding physicians who take our pain seriously can help to make the process of managing a chronic condition less stressful.