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.
You can find my other reviews on the MH@H book review index or on Goodreads.
Looks like a great read. I recommend podcast called MS conversations with Candi which covers these topics too. Happy Thanksgiving! Or do Canadians celebrate on a different day?
Thanks for sharing the recommendation!
We do Thanksgiving back in October when the weather is better. 😉 Happy Thanksgiving!
I think people saying ‘you don’t look sick’ are trying to be polite and supportive. ‘Well, I understand you are sick but at least you don’t look it’
I agree, that’s most likely the motivation.
Looks like a good book. 💞 I know, and have known, a number of people with MS. It is a devastating condition. Oddly, and I have no idea why, Saskatchewan has one of the highest rates of MS. There are so many ‘invisible’ physical and mental conditions that I cannot imagine why so many people are still so oblivious to them.
That’s so strange that Saskatchewan has such a high rate.
It is strange.
I just have to wonder if some of this stuff that’s found in the chapter to never say to those with MS, isn’t also found in the chapter of life book called be a decent human being.
Some of it, probably. I’m sure there are also things people say and they think they’re being helpful, without realizing that they’re not at all.
And, I agree with that. I guess I’m just more and more cynical as time wears on.
Haha me too.
I feel the same way with epilepsy. If I tell someone at work I’m not feeling well because of something associated with it, they don’t believe me because they don’t see me actively having episodes.
Ugh, that sucks.
Her “I’m not just a girl with MS” chapter reminded me of your recent post on how you’re not just your mental illness. I always thought I’d give this a read but never have. Life gets in the way and then another year is gone. I’ll have to make sure I actually pick up a copy to check it out soon so thank you for this. Another fab review.xx
Yeah, as I was ready that chapter, I was thinking hey, I’ve got a post coming up about this…