November 28, 2022
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Photography by Demetr White/Stocksy United
The medical system — and the language it uses — adds to this sense of defeat. We can change it, though.
It seems oversimplified to write that having a chronic illness is hard. Yet, it is incredibly hard.
As a woman with Crohn’s disease, I must manage medications and my dietary needs and navigate a complex medical system, all while being sick. Even when I expertly manage my Crohn’s and follow my doctor’s advice, my disease can progress. Even when I can objectively say I did everything I could to prevent progression or leaving remission, it’s still so easy to feel like I could have done more than I did.
At least four factors contribute to this constant feeling that I’m not trying hard enough.
When medical professionals discuss IBD medications not working, the language they use assigns blame to the patient. When my Crohn’s progresses despite being on medication, I’m told, “You failed the medication.” Messages of failure are easy to internalize.
The reality is that medicine and treatments are not perfect. Only about 50% to 60% of people with IBD show improvement in symptoms or inflammation markers in response to initial treatments. Others may initially respond to treatment and later stop responding. Simply put, the available treatments far too often fail us.
Unfortunately, rather than assigning blame to the medication, the language used by medical professionals often places blame on us.
The medical system itself also fosters feelings of failure. Some health insurance companies will deny coverage for a prescribed treatment until you have “failed” a different medication first — a process known as step therapy.
Every time a medication has failed me, I’ve felt defeated, as if I somehow could’ve done more to prevent it from failing. When a doctor’s expertise in prescribing an appropriate medication is ignored in favor of step therapy, there’s a higher chance of disease progression and medication failure.
In addition to loaded language about failure, other phrases, like “patient is noncompliant,” place blame on us.
I’ve been noncompliant with a prescribed treatment because:
In all these cases, my noncompliance had nothing to do with my willingness to try the treatment or follow the doctor’s recommendations. Yet, wording my inability to complete the treatment as “noncompliant” places the blame on my shoulders.
Additionally, when I can’t follow my doctor’s orders, I feel a sense of failure. For example, when I’ve been unable to afford a recommended item, I feel a sense of failure that I can’t obtain the things I need to help myself.
During my first bowel obstruction, a nurse said to me, “If you know that Chinese food can cause obstructions, then why did you eat it?” This comment made me feel as if the bowel obstruction was my fault. Today, I recognize that it came from her misunderstanding (a common one) that all individuals with an ostomy must follow a low-residue diet.
Many medical professionals are under the assumption that people with ostomies can’t tolerate specific foods like roughage. But in fact, many ostomates enjoy a full diet. For years, I could eat anything I desired without symptom exacerbation or obstruction. My first obstruction was a symptom that I had newly developed strictures.
Nevertheless, that nurse’s comment stuck with me. As my Crohn’s disease progressed, I developed additional narrowing in my intestines and more strictures. Eating became increasingly challenging, as food that had once been safe became problematic. With each obstruction, I anxiously wondered if I’d made a mistake when assessing whether the food was safe.
Instead of placing the blame where it belonged, on my IBD, I blamed myself for the symptoms.
While I do my absolute best to follow my prescribed diet and not miss doses of medication, I’m also human. Sometimes I can’t resist eating something that I know can cause higher output or other symptoms. I also sometimes forget to take my medication. No one is perfect.
I used to be ruthless with myself in such circumstances. I’d tell myself that I was “stupid” or that it was my fault that I was having symptoms. This negative self-talk and blame aren’t healthy, either.
Even though it’s so easy to feel like I’m failing, I must remember that all I can do is my best and that I have a disease that can progress even when I do everything “right.”
Self-blame is a form of stress. Stress can trigger IBD flare-ups and symptoms. Therefore, learning how to combat these feelings of failure is important for my health. I’ve worked with a licensed therapist to learn ways to decrease my overall stress and have learned several strategies to counter feelings of not trying hard enough. These include:
Just because the medical system can lay blame on the patient with language does not mean I have to. I’ve talked with my doctors about my preferred language when we discuss treatment failure. Using more empowering language allows me to not internalize messages of failure when they’re not mine to take on.
I objectively examine my thinking when I feel like I’m failing or not trying hard enough. For example, when a treatment doesn’t work and I feel like I failed, I step back from the feeling and remind myself that medication failures are common and that patients like myself can’t control whether they work or not.
Learning radical self-love and acceptance has meant that I’ve learned how to accept and care for myself and that I’m inherently worthy of respect and love. Developing these beliefs has taken time and began with changing my internal messages.
When I’m human and miss a dose of medicine or eat that bowl of ice cream, I no longer beat myself up. In the beginning, I had to work hard at noticing when I was blaming myself. Once I became aware of this habit, I learned to have a conversation with myself where I’d talk back (out loud) to the blaming message.
For example, if my thought was, “Why did you eat that? You know better. What is wrong with you?” I’d say out loud, “This food doesn’t usually bother me. Even if I knew it could cause a problem, I can’t go back in time and change it. All I can do is learn going forward. It’s OK to make mistakes. No one is perfect.”
Over time, I began to internalize this kinder self-talk. Sometimes it’s more of a struggle than others, but when I let go of perfectionism and embrace myself, I’m more able to not blame myself for the disease.
Between medication failures, language that blames the patient, and systemic issues within healthcare, it’s easy to feel like you’re not doing enough for your IBD. These feelings can cause stress, which can exacerbate the disease. Combating these feelings is important to managing this stress and reclaiming empowerment.
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