5 Ways Doctors Can Better Support Their Patients With Crohn's Disease
Even the most highly trained gastroenterologists often miss the boat when it comes to supporting their patients who live with Crohn’s disease. Training and education aside, understanding the emotional strain(s) which occur, and addressing the feelings of body betrayal that we are often forced to face when our bodies don’t do what they were designed to do, is astronomical and generally outside of the training they receive to become doctors. So, here are some of the ways doctors can help support their patients who live with Crohn’s:
1. Truly understand how frustrating and upsetting it is for us to hear you say, “But you look great.”
Interestingly, that statement can leave us feeling as though we are not “really sick,” “that sick” or in some way that we are exaggerating our symptoms and illness. If we look, “that good,” we must be OK, right?
I understand that you believe that you are telling us that we don’t look as bad as we think, or as sick as we feel, but it is actually quite dismissive and an example of, “When is a compliment not a compliment?”
Or the other famous comment, “But, it could be worse…at least it isn’t ____.” Of course it could always be worse, but it could also be a heck of a lot better, so the comparison is not generally received as comforting. If the patient says this, you can appreciate their ability to find balance and healthy comparison, looking for the positive side to a difficult situation or diagnosis, but don’t suggest this as a coping skill for receiving scary life-long medical news!
2. Please, educate yourself about pain levels and pain treatments from the standpoint of this disease.
There are so many things being said today about pain levels and pain treatments. It is only recently that pain was identified as something that needed treatment as its own diagnosis and, over time, bloomed into what is now referred to as “The Opioid Crisis.” Doctors could be so much more supportive to their patients if they were able to not dismiss the pain or the experiences of their patients, but to remember that there are so many more factors that go into pain management than the levels of pain alone.
An article I read recently about the placebo effect in treating chronic pain talked in-depth about the fact that pain levels are reported as higher and more constant in persons who self-identify as lonely, and/or whom admittedly don’t have strong support systems to help them address and deal with their chronic disease. Doctors, please get to know your patients emotionally – not just the condition of their intestines!
3. Understand that while you as a doctor can’t cure an incurable disease, you can teach patients how to live more functionally with this disease while working towards remission and greater control of their daily symptoms.
As important as it is to get patients on meds to work towards greater control of the disease, and hopefully achieve remission, teaching and supporting patients to understand how to address their daily symptoms is key in allowing them to live functional daily lives. I know of few people who want to quit work or get fired from their jobs to sit home and run to the toilet 15-25 times a day. Why are patients not taught that there are different types of medical supports available and that there are things you can do every day to help address the day-to-day symptoms as you also work with the doctors towards achieving long-term remission?
Discuss the use of meds, such as Imodium, anti-spasmodic medications to calm the bowel so it doesn’t cramp and run 24/7, ginger tea for nausea, in addition to other meds. In addition to losing our privacy, our sense of control over our own bodily functions, we also don’t need to lose our employment and livelihood because no one has helped us learn how to keep our professional lives going while learning to navigate a life-long disease.
4. When you present someone with a diagnosis of Crohn’s, don’t just dismiss him or her to return in six weeks to discuss treatment options.
Patients often leave doctor’s offices in shock and with no immediate medical treatment/plan, or any additional information to help them right their sinking emotional ship. Oftentimes, they are so overwhelmed with the diagnosis that they don’t know what to ask their doctors in the office so they don’t ask anything, which is then received by the doctors as having no questions.
Please provide pamphlets, or a list of reputable website addresses from which to access accurate information. I have read that many doctors are telling newly diagnosed patients to join a Facebook support group, not knowing which groups are well run and accurate in their support provision, and then assuming the job of education is up to other patients to provide. Yes, we do have a working knowledge, understanding, and perspective no one else can have and many of these support groups are wonderful – but they were never meant to be a substitution for a doctor’s information and education.
While I believe we run a great site, we are patients and our experiences are our own and from our own perspective and despite our decades of experiences. We are not MDs and should not be providing the level of medical diagnostics and treatment you should be providing to your patients.
5. Remember that for as many patients as you have with Crohn’s, that there are as many ways that Crohn’s might present.
This disease is not like many others with a straight trajectory or clean definition, and it presents in myriad persons in myriad ways – none of which is more right or wrong. It is just different. Just helping a newly diagnosed patient understand that concept alone would be enormously helpful.
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