Why patients with irritable bowel syndrome are angry at their doctors

I’ve had irritable bowel syndrome for 20 years, and I’m angry. About the pain, and the suffering, and the limited diet, and the huge impact that it has had on my life. But mostly, I’m angry at my doctors. No, they didn’t misdiagnose me. No, they didn’t harm me. No, they didn’t treat me like dirt. But they still made me angry.

Before we go any further, let’s get one thing straight: I know that IBS is difficult to treat. Try to help an IBS sufferer and you are presented with an unholy mess of anti-diarrheals, laxatives, fiber supplements and anti-spasmodics, and that’s before we even start arguing about which diets might be useful. So I don’t expect my doctor to cure me. I don’t expect a miracle.

I know that IBS patients are “heart sink” patients; that doctors dislike our visits because we’re so tough to help. I understand that it must be horrible to have patients who you don’t know how to cure, who are begging for relief you can’t provide. It’s not the physical treatment of my IBS that has made me angry. It’s the way that I have been treated as a person.

I have this deep, open wound in my heart, caused by two decades of suffering, and yet my doctors refuse to acknowledge it. I talk about my emotions, my despair, and I am dismissed. “We know IBS can be uncomfortable, but it isn’t really serious,” they tell me. “It’s not life-threatening, after all, it’s not cancer. You need to learn to live with it. Come back and see me if you get a new symptom, but otherwise it’s just IBS.”

I think about the jobs I’ve almost quit, and the hours spent sweating and shaking in a bathroom, and the nights I’ve spent crying myself to sleep. And I wonder where they’re getting their information from, these doctors, about the power of IBS; what textbooks and lectures they are relying on, what experts they are trusting so much more than they trust me.

I wonder if there are other patients they’re not listening to. Other sufferers who talk honestly and openly about their feelings and are told that their emotions are impossible, because a mildly malfunctioning gut couldn’t possibly cause such misery.

This is what makes me angry. I’m not asking for a solution, I’m not asking for a cure. I’m asking you to believe me, to trust me when I show you my wounded heart. I’m not a drama queen, or a hypochondriac; I’ve been ill for 20 years, and it has hurt me. Please believe me when I tell you that.

Your heart would be wounded too.

Sophie Lee runs the website IBS Tales and is the author of Sophie’s Story: My 20-Year Battle with Irritable Bowel Syndrome.

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