“I I was so looking forward to the night out and celebrating with my friends. The restaurant reassured me again and again that the food was gluten free, then came back to say the noodles were not after I had already eaten some! I was really panicking; I didn’t want the night to be ruined by feeling unwell.”
Mary* suffers from celiac disease and type 1 diabetes. Her life feels like it is dominated by medical appointments; she must constantly monitor and monitor her energy and glucose levels, while also following a very strict gluten-free diet. This increased vigilance about her health also seeps into other corners of her life. She rarely feels in sync with family and friends because her energy levels don’t match theirs, her diet means she can’t eat the same foods, and she often feels let down by a body that doesn’t quite “work” like everyone else it seems otherwise.
Mary came to me after a particularly disturbing episode in which she was served food containing gluten at her own birthday dinner, despite careful consultation with the waitstaff.
“It’s horrible having to be so careful all the time and then dealing with the health consequences of being given wrong information about a meal. I want to be able to relax and enjoy an evening like everyone else, but instead I feel anxious, distrustful and like I’m causing a scene.”
The themes of feeling like a burden to other people, or not understanding the impact of a chronic illness on daily life, were too familiar to Mary.
Psychology researchers have reported that people with chronic conditions may experience a specific phenomenon described as “health-related guilt.” What this means is that we experience a gap between how we are and how we (or others) think we should be.
For example, Mary tells me that she feels guilty that she can’t be the “perfect” parent because she is often too tired to run around with her kids or eat the cookies she likes to bake with them.
To make matters even more difficult, we know from research that higher levels of health-related guilt are linked to feeling worse in our bodies, poorer emotional health and greater social isolation. So feelings of guilt that arise from our physical circumstances can become a vicious, downward spiral – the worse we feel, and so on.
It is important to recognize the very real limits and limitations that the disease places on Mary’s life and to validate her distress. That said, it’s also important to equip her with some good skills to reduce health-related guilt and establish a good coping routine.
A starting point for Mary was starting a practice self-compassion and friendly curiosity. When Mary’s emotions came up like frustration, disappointment, fear, or hopelessness, we tried a new way of thinking. First, Mary took a moment to identify what she was feeling (“These are nerves I’m feeling”) and instead of judging or being critical, she noticed how this emotion was a natural response to the situation she was in. (“Of course I’m nervous, I want to have a good birthday dinner”). She practiced replacing her responses with statements like, “I’m nervous.” And it is still possible for me to enjoy my evening”. Then she offered herself a kind of curiosity: “I wonder if these feelings will go away if I take a few deep breaths outside.”
after newsletter promotion
One way to boost these self-compassion skills is to ask, “How would I respond if this were my best friend in this situation?” Mary realized that her best friend, Karen, has a severe food allergy, but that never made her think worse. By removing herself from the situation for a moment, Mary learned to channel that compassion for Karen to herself, recognizing that she deserves kindness too.
We then talked about how feeling hopeless about our health can sometimes make us feel like there is nothing good anywhere in our lives. Using a skill called “realistic optimism”, Mary learned to reframe difficult experiences as temporary (“this flare-up won’t last forever”), specific to just one area of her life (“my chronic illness is just part of who I am”), and not a personal flaw (“in my situation everyone would react the same way”). In practice, this meant tracking small improvements and more stable periods of health so that she didn’t just notice the bad times. She also paid more attention to what was going well in her life, such as her work and friends she kept in touch with.
Importantly, self-compassion and realistic optimism are not about putting a “happy lens” on everything, but rather about noticing good things while acknowledging harsh realities. Or as Mary remarked one day, “Just because I have temporary setbacks doesn’t mean I’m not making progress.”
In our last session, Mary and I talked about how it felt better to view her illnesses as a shared responsibility (“our problem”) than to tackle it alone (“my problem”), and she reminded herself of all the people in her live in her team. She still feels isolated and overwhelmed at times, but much less guilty because she allows space for her chronic conditions and – thankfully – a lot less hard on herself because she has done her best.
*Names and details have been changed