The Company We Keep · Issue 001
“A face for autoimmune conditions. A voice for chronic illness.”
Patient advocate, author and “Mutmacherin”
Ira Schiwek is a patient, an author and what she calls a Mutmacherin, a word German has and English doesn’t, somewhere between encourager and the person who makes you brave. She runs Autoimmune Balance Club from home, in the hours around her daughter’s school day, for people who have spent years being told their symptoms were in their heads. Her book, 44 Impulse für deinen autoimmunen Alltag, came out in 2024 and is the reason most of her community found her. We know her through Laura, who she has known for years. She shares Samsa with her community because she chooses to, not for money: they get a code, and she takes nothing from it. She answered our questions in German, in one sitting, and declined to make any of it sound more heroic than it is. The translation is ours; the words are hers.
What problem did you set out to solve?
“I give people with autoimmune conditions a face, and people living with chronic illness a voice, and I encourage them to stand up for themselves. Many of us go through years of medical gaslighting. Naming that, and showing people ‘you are not alone’, can make an enormous difference.”
What’s the hardest part people rarely see?
“That my illness has become my job. It means that even on good days, I’m dealing with my diagnosis.”
When did your work first make a difference?
“For a long time I didn’t realise that being visible made any difference. When I wrote my book I thought, if I can make a difference to one person, the work will have been worth it. I’m still fairly overwhelmed by the response.”
On your busiest days, what happens to your meals?
“I work mostly from home, in fairly tight windows, because I don’t want to leave my daughter in school all day. On days with a lot to do I usually forget to eat and to take breaks, and I drink too much coffee and too little water.”
Has digestion ever got in the way of your work?
“When I’m travelling and have to rely on convenience food, it really triggers my symptoms, and I struggle even more with fatigue and brain fog.”
What gets you through a long day?
“When I’m out I always have a big box of raw vegetables with me. Maybe I should start doing that at home too.”
What do you wish you’d known sooner?
“How sweet a pepper actually tastes once you stop living on sugar and ultra-processed food.”
One recommendation to pass on?
“My book. Though it’s only available in German.” 44 Impulse für deinen autoimmunen Alltag (Avocado Verlag, 2024).
Something people don’t know about you?
“I’m actually quite introverted and feel very unsure in social situations. I’ve learned to step into extroverted roles, but I have to step back out again afterwards. It’s exhausting.”
Ira is a quiet person with a loud job, and she’d be the first to tell you the second part costs her the first. Find her at @autoimmunebalanceclub, and her book wherever German books are sold.
The Company We Keep introduces the founders, entrepreneurs, practitioners and makers we learn from. One guest per issue, in their own words. Where a guest stocks, is gifted, or partners with Samsa, we say so in the first paragraph. All issues →