About This Episode

When you’ve been in pain for as long as you can remember, how do you answer the question “On a scale of 1 to 10, how bad is it?” Lauren (@nourishing_lauren) lives with mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS) and hypermobile Ehlers-Danlos syndrome (hEDS). On this episode of Invisible Strength, she talks with Karin about being dismissed by doctors, managing her own care, the surprising trigger hiding in everyday products, and the practice she calls “rest maxing.”

Key Takeaways

• Lauren’s symptoms started around age 10 with a UTI that never went away, and other issues layered on from there.
• She was told things like “painful periods are normal” before getting diagnoses that explained a lifetime of symptoms.
• She keeps a large folder of her medical history and acts as her own “medical manager.”
• Her biggest MCAS trigger is lemon, and citric acid shows up in food, shampoo and cleaning products.
• “Rest maxing” means making your rest truly restful, and it’s how she works full time and studies.

“It’s not normal”

Lauren was about 10 when she got a UTI that never fully went away. “When you’re that age you don’t talk about it. You don’t really know that that’s not normal,” she said. Over the years, more symptoms built on top of each other, and doctors often brushed them off. “Doctors are like, ‘It’s not that bad. Painful periods are normal,’” she said. “It’s not normal.”

In the last year things spiraled, and she was diagnosed with MCAS, POTS and hypermobile EDS. The diagnoses helped many of the things she’d always dealt with make sense.

Being your own medical manager

Lauren lives in the UK, where she says waiting times for appointments can be long. “You have to be your own medical manager,” she said. “No one’s going to do that for you.” She brings a big folder to every appointment, with specific examples written down, because brain fog makes it hard to remember what happened last week, let alone months ago.

“My 10 is not your 10”

One of the most relatable moments in this episode is about pain scales. “I’ve had pain my entire life, so my 10 is not your 10,” Lauren said. “My 10 is like we’re in A&E and I’m having to get morphine.” When pain is your baseline, your sense of what counts as “bad” shifts, and that makes it even more important for clinicians to listen to the whole story.

The lemon trigger hiding in everything

Lauren has avoided gluten and dairy for years, but her biggest trigger surprised even her. “Honestly, the main one for me is lemon. And it’s so annoying, ’cause lemon’s in everything,” she said. Citric acid shows up in food, shampoo and household cleaning sprays, so she reads labels on all of it.

What “rest maxing” really means

Lauren works full time and studies. Her job is on her feet all day but low stress, which she says makes a big difference. When she does get time to rest, she makes the most of it. “Don’t be like, ‘Oh yeah, I’m just going to chill and do this at the same time.’ Like no, get in bed, shut your eyes, have a nap, rather than watching TV.” Pajamas are essential, and complete darkness if she can get it.

Silver linings

Living with these conditions has given Lauren something many people don’t have. “I understand my body a lot more than other people do,” she said. “I know what means what.” Her closing reminder is one we come back to often: everyone’s chronic illness looks different.

Free resource: Grab the free RESET workbook mentioned in this episode: https://invigorateyourjourney.com/reset-workbook/