“I was so looking forward to the night out and celebrating with my friends. The restaurant reassured me over and over that the food was gluten free, then came back to say the noodles were not after I had already eaten! I was really scared; I didn’t want the night to be ruined by feeling unwell.”
Mary* lives with celiac disease and type 1 diabetes. Her life feels like it is dominated by medical appointments; she has to constantly watch and monitor her energy and glucose levels, while also maintaining 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. else’s appears to be.
Mary came to see me after a particularly distressing episode where she was served food containing gluten at her own birthday dinner, although she had checked carefully with the waiters.
“It’s terrible to be so careful all the time and then deal with the health consequences when I’m 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 others not understanding the impact of a chronic illness on everyday life, were all too familiar to Mary.
Psychology researchers reported that people living with chronic conditions may experience a specific phenomenon described as “health-related guilt”. What this means is that we experience a disconnect between how we are and how we (or others) think we should be.
For example, Mary tells me how she feels guilty that she cannot be the “perfect” parent because she is often too tired to run around with her children or eat the cookies she likes to bake with them.
To make things 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 guilt arising from our physical conditions can become a vicious, downward spiral – the worse we feel, and so on.
It is important to acknowledge the real limits and limitations that illness places on Mary’s life and to acknowledge her distress. That said, it’s also important to equip her with some good skills to dial back health-related guilt and achieve good coping.
A starting point for Mary was the beginning of a practice of self compassion and friendly curiosity. When emotions such as frustration, disappointment, fear or hopelessness arose for Mary, we tried a new way of thinking. First, Mary would take a moment to name what she was feeling (“It’s nerves I’m feeling”) and, rather than judge or be critical, she would notice how this emotion is a natural response to the situation in which she was (“Of course I’m nervous, I want a good birthday dinner”). She practiced replacing her responses with statements such as “I feel nervous and it is still possible for me to enjoy my evening”. Then she offered herself a kind curiosity: “I wonder if I go outside for a few deep breaths if these feelings will pass”.
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One way to start these self-compassion skills is to ask “how would I react if it were my best friend in this situation?” Mary thought that her best friend, Karen, had a severe food allergy, but she had never thought worse of her. By removing herself from the situation for a moment, Mary learned to channel that compassion for Karen to herself as well, recognizing that she too deserved kindness.
Next, we talked about how feeling hopeless about our health can sometimes make us feel like there is nowhere good in our lives. Use a skill called “realistic optimism”, Mary learned to reframe difficult experiences as temporary (“this flare up won’t last forever”), specific to only one area of her life (“my chronic illness is just one part of who I am”), and not a personal failure (“anyone in my situation would react the same way”). In practice, this meant keeping track of small improvements and more stable periods of health, so 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 who kept in touch.
It’s important that self-compassion and realistic optimism are not about putting a “happy lens” on everything, but rather about seeing lots of good things while acknowledging harsh realities. Or as Mary remarked one day: “just because I have temporary setbacks doesn’t mean I’m not moving forward”.
In our latest session, Mary and I talked about how framing her illnesses as a shared responsibility (“our problem”) felt better than tackling them alone (“my problem”), and she reminded herself of all the people in her life who rely on her. She still feels isolated and overwhelmed at times, but much less guilty for allowing space for her chronic conditions and – thankfully – much less hard on herself to do the best she can.
*Names and details have been changed
