You Don’t Look Sick: My Journey With an Invisible Illness by Kristen Dutkiewicz is a memoir recounting her experiences with multiple sclerosis.
The book is written in a way that’s likely to be useful for people who have MS, people wanting to support someone in their life with MS, and people who are curious to know more about what the condition is like. The author talks about her symptoms and her experiences getting treatment, including a rather useless-sounding neurologist who didn’t deal properly with her relapses and minimized the symptoms that she was reporting. It bugs me that it seems like everyone who has an invisible illness has stories of health care providers not taking them seriously, although not everyone ends up in hospital because of it, as Kristen did.
At the end of each chapter, she offers words of advice for others with MS, including getting treatment from an MS specialist rather than any garden variety neurologist and focusing on possibilities rather than limitations. She also offers the reminder that “little steps forward are better than no steps at all.”
There’s a chapter with things never to say to someone with MS, such as “you don’t look sick,” which is another one of those experiences that it seems like everyone with an invisible illness has had.
There was also a chapter titled “I’m not just a girl with MS.” The author writes, “I included this chapter to remind everyone that I am a person first. Anyone diagnosed with any invisible disease has hobbies, interests, skills, and dreams.” So true.
While I have a mental rather than a physical illness, I feel like there’s so much overlap in the experiences of people who have any kind of invisible illness. A lot of the things that were covered in this book felt very familiar to me, even though our symptoms are very different.
This is a short book, so it’s a quick read, and the bits about symptoms and treatment are written in very accessible, reader-friendly language. There’s a good balance of information about the condition, personal experiences dealing with the illness, and personal experience with other bits of dealing with chronic invisible illness life. I think this would be a great read for anyone newly diagnosed with MS, as well as anyone wanting a better understanding of what it’s like to live with the illness.
You Don’t Look Sick is available on Amazon (affiliate link).
The author’s blog is Kristen Dutkiewicz.