“I was so looking forward to the night out and celebrating with my friends. The restaurant reassured me over and over the food was gluten free, and then came back to say the noodles weren’t after I’d already eaten some! I was really freaked out; I didn’t want the night to be ruined by feeling unwell.”
Mary* is living with coeliac disease and type 1 diabetes. Her life feels as though it’s dominated by medical appointments; she needs to track and monitor her energy and glucose levels constantly, while also maintaining a strict gluten-free diet. This heightened vigilance about her health seeps into other corners of her life too. 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 food, and she often feels let down by a body that doesn’t quite “work” the way everyone else’s seems to.
Mary came to see me after a particularly upsetting episode where she was served food containing gluten at her own birthday dinner, despite checking with the waitstaff carefully.
“It’s horrible having 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 too familiar for Mary.
Psychology researchers have 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 ought to be.
For example, Mary tells me about how she feels guilty that she can’t be the “perfect” parent because she’s often too tired to run around with her kids or eat the cookies she loves to bake with them.
Making things even harder, 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’s important to acknowledge the very real limits and constraints illness imposes on Mary’s life and to validate her distress. That said, it’s also important to equip her with some good skills to dial back health-related guilt and dial up good coping.
A starting point for Mary was starting a practice of self-compassion and kind curiosity. When emotions such as frustration, disappointment, fear or hopelessness surfaced for Mary, we tried out a new way of thinking. First, Mary would take a moment to label what she was feeling (“These are nerves I’m feeling”) and, rather than judging or being critical, she’d notice how this emotion was a natural reaction to the situation she was in (“Of course I’m nervous, I want to have a good birthday dinner”). She practised replacing her reactions with statements like: “I feel nervous and it’s still possible for me to enjoy my evening.” Then she offered herself some kind curiosity: “I wonder if I go outside for a few deep breaths whether these feelings will pass.”
One way to kickstart these self-compassion skills is to ask: “How would I respond if this were my best friend in this situation?” Mary reflected that her best friend, Karen, has a serious food allergy but she had never thought worse of her because of it. By removing herself from the situation momentarily, Mary learned to channel that compassion for Karen towards herself as well, acknowledging that she is deserving of kindness too.
Next, we talked about how feeling hopeless about our health can sometimes make us feel as though there isn’t any 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 for ever”), specific to only one area of her life (“my chronic illness is only one part of who I am”), and not a personal failing (“anyone would react the same way in my situation”). In practice, this meant keeping track of small improvements and more stable periods of health, so she wasn’t noticing only the bad times. She also paid more attention to what was going well in her life, including her work and friends who keep in touch.
Importantly self-compassion and realistic optimism aren’t about placing a “happy lens” over everything but rather noticing nuggets of good stuff while acknowledging hard realities. Or as Mary noted 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 it alone (“my problem”), and she reminded herself of all the people in her life who are on her team. She still feels isolated and overwhelmed sometimes but much less guilty for leaving space for her chronic conditions and – fortunately – a lot less hard on herself for doing the best she can.
*Names and details have been changed
• Gaynor Parkin is a clinical psychologist and founder of Button Psychology. Dr Amanda Wallis leads the R&D and innovation team at Umbrella Wellbeing
