Invisible Disability, Self-Esteem & Body Confidence

When I was 15 years old, I went to ”fat camp”. It was the mid 80’s and after several failed attempts to lose weight via kids’ Weight Watchers’ meetings and ”the grapefruit diet”, I begged my mom to send me to this diet camp I had seen advertised in a teen fashion magazine. 

The camp, named Camp Camelot, promised weight loss via a 1200 calorie a day meal plan and daily Jane Fonda workouts.

In a 1986 NY Times article about weight loss camps, Thelma Hurwitz, the owner of Camp Camelot was quoted as saying,

”We don’t want them (kids) to get skinny, skinny. Just to feel comfortable with themselves so they’re not ashamed to go shopping with their friends and buy shorts”.

Thanks for that, Thelma.

I was just 5-10 pounds above the ”average” weight of girls my age & height when I left for diet camp. But, I wanted a body that was stick thin like my friends’ bodies  and also one that could do everything their bodies could do. Due to an inherited neuromuscular condition, I couldn’t run or jump, and tripped a lot. The disease, called Charcot Marie Tooth, is slowly progressive. You can read more about this in my blog, Skinny Jeans & Leg Braces. Of course, it didn’t help, that my closest relatives had body image issues & questionable eating disorders of their own.

My dad weighed himself 10x a day (still does) and constantly talked about his weight. His mom, my Grandma Edith, walked 5+ miles a day well into her eighties because she wanted to remain thin. My mom and her mom, my Grandma Esther, were also constantly dieting. My Grandma ate ½ of a tiny ”diet muffin” for breakfast every day of her adult life. After breakfast, she’d stand on a large electronic contraption (we nicknamed it ”The Monster” ) that vibrated and supposedly rolled away the fat. The patriarch of the family, my Grandpa Nate, gave mixed messages. Two of his many unwritten rules:

  • Don’t ever take a 3rd helping of fried matzah.
  • Fill up your plate at the country club’s buffet brunch so he gets his money worth.

Ironically, even though everyone was always ”watching” their weight, most conversations were centered around food and the newest must try restaurants.

In one of my camp letters home, I even bragged about being the skinniest girl at camp and winning the title of ”Ms. Camelot”. My sister recently found that letter in #15 of my (now deceased) mom’s meticulously labeled scrapbooks.

I could go on and on, but I think you get the gist. Like so many other young girls of my generation, I didn’t have ”body positive” role models. I was raised to believe that physical appearance was everything and If you worked at it, being thin and pretty might even compensate for other imperfections (like having a disability).

I’m not gonna tell you to ”love your body”, when I know firsthand that it’s easier said than done. Even though I’ve come a long way since those Camp Camelot days, I can’t undo 47 years of body shaming. I don’t love a body that wakes me up at night with nerve pain and requires me to wear leg braces to walk. I’m not gonna lie & say that fitting into my jeans isn’t important to me or that I like the wrinkles forming near my eyes.

So, instead of forcing a fake, unrequited love with my body, I’m working towards body indifference; Accepting the things I cannot change and becoming less interested in the things I can. I’m focusing less on my body (both the perceived good & bad parts) and putting more energy towards activities that bring joy.

Do you want to join me in becoming body indifferent? Here are some tips:

  • Find fulfilling activities Do you have any hobbies?  Do they involve looking a certain way? Unless your answer is modeling, chances are, that you don’t have to look a certain way or be a certain size to participate in most activities. Do more things that excite you and help you to feel good about yourself.
  • Learn your triggers Do you get an icky feeling about yourself whenever you’re around certain people? Or, does flipping through fashion magazines cause you to judge your body harshly? For me, Facebook (not the Trend-able page of course) brings me little joy and is sometimes a catalyst for bad self-image days
  • Don’t compare There’s a 20 something woman who always takes the machine next to me in pilates class. She has no cellulite and a butt you could rest a glass on. It’s tempting to look in the mirror and mentally compare my 47 year old body to hers, but doing so would be masochistic and I’m no longer into that.
  • Focus on what you can do There’s a lot my body can do despite having physical challenges. I am grateful for my ears that can hear, my eyes that can see and my legs that can walk.
  • Hide the scale I still weigh myself, but not more than a few times a month. When the scales not in plain view, I think about it a lot less. I rely more on how I feel in my clothes and how much energy I have.
  • Have a weight range I used to focus on a specific number with no allowance for fluid retention or weekend fun. Now, I try to aim for a healthy weight range instead.
  • Take pride in non-appearance related attributes – I like getting compliments about my appearance; Who doesn’t? But, I equally love hearing someone say I made them laugh or that I’m a good writer.

What do you think? Do you have any to add to this list? Let us know in the comments section below.

18 Comments

  1. Thank you for this amazing advice inspiring woman. I think people know these seven steps but constantly have to re-in force their brains to rememer them. As a woman in the 40 plus age and mother of 3 #3 is the one I have to say daily when I am in the gym.

  2. Love it. I work in a place dominated by Hollywood royalty and I have CMT and an ass. It’s hard! But I like the idea of body indifference.

    • 😂😂 I laughed outloud at ”CMT & an ass ”…Living in California in general where ”it appears” everyone is perfect & able, has to be challenging. I’m glad you could relate & hopefully will join me in striving for ”body indifference”. 💕

  3. I like hearing I have courage, I am brave. I also like to hear and do my art more often than I do. I am self conscious about my art work. I do love the fluidity of watercolor. Working at not being perfect.

    • Thanks for your honesty & courage Margie. I’m a wannabe painter but not patient enough. Plus, I have no skill…Keep painting! I’m also working on not needing to be perfect. 💕

      • I am trying mixed media collage cuz you can paste, cut, write, stamp, etc and not have true artistic ability. Now that I stay home more I needed something to do. They have so many videos on u tube that it is easy to learn. You also use the same instructions for making journals! Try it you will like it.

  4. You are a GREAT writer! And a hugely inspirational one, at that! I love reading your daily blog, and it absolutely motivates me to try harder, not give up, but not be too hard on myself and acknowledge my limitations. Love you, Lainie! 💕

  5. As most of us I was in denial of my CMT ‘condition’. I am slowly getting rid of the shoes and clothes I can’t wear but it’s tough. I can say with great excitement I can still wear the same sized earrings and socks that I wore from high school.
    Thank you for your inspirational and humourous notes to us. I find myself ‘nodding’ a lot. Cheers!

    • LOL! What a great attitude. I realize I can also wear my HS earrings and socks!! I like to say I have forehead wrinkles from my “very expressive eyes” 😉

  6. Body indifference – I like that! It’s something I try to practice myself – I am no longer going to fall for the ‘must-have’ beauty items or treatments, because I’m not a model, I don’t make my living from my looks, and frankly, I don’t think anyone else is looking at me nearly as closely as I’ve always looked at myself.

    I have the same condition as you, and something I’m also trying to do is stop hiding it. My mum had it too, and spent her entire life choosing clothes that would conceal her feet, and encouraging me to do the same. But I’m fed up with it. I’m not going to wear wide leg trousers that don’t suit me, just because they hide my shoes – my straight jeans look way nicer, and if that means people can see my feet are twisted, well, maybe people need to know some of us are like that, and we’re out and about and living life just like they do. And if they’re rude enough to stare, well that’s really their problem, not mine – which isn’t to say they won’t get my Patent Why Are You Looking at My Feet Death-Look in return!

    • Hi Francis,
      Thanks for commenting. That’s awesome & brave. Good for you! Everyone should do what makes them feel good on the inside. Personally, showing my braces (on an everyday basis) wouldn’t help me with confidence. It’s not about hiding but more about not defining for me. Anyhow, thanks foe relating & being a strong, awesome CMT friend. 💕

      • Ah well, confession time, I don’t show my braces either. It’s taken me years to be OK (ish) with showing my shoes, and as a result showing the shape of my feet, rather than never revealing more than the toe of a boot! I actually saw a girl recently who had braces very like yours, and she was just wearing them loud and proud, with ballerina flats and a short skirt, and no one seemed to be batting an eyelid. I am not there yet, and I’m not sure I ever will be.

        Just out of interest, what do you do about going to the beach? I don’t mind showing my legs if I’m just with my husband and everyone else on the beach is a stranger – but I cannot ever imagine doing it with friends, or even family apart from my dad and my brother. Which may prove a problem in the future as we’re hoping to move to the coast and I have no doubt we will suddenly get a ton of visitors, who’ll all want to head for the beach.

  7. Hoo boy, this hits home! I have a mom who still counts calories and makes comments about people’s weight. It really affected me as a teen, being too skinny and obsessed with food, and took me years to get comfortable with being a healthy, happy weight. Which came right around motherhood years, no surprise!

    Now that I know I have CMT, I am learning a whole new way to accept my body, in large part from your blogs and posts! I am so grateful for your wise and spot-on counsel, Lainie. Thank you!!

    • Reeve, we are truly cyber sole mates 💕😂. We have soooo much in common (although never been too skinny 😂😂) . I’m grateful to you for your support & virtual love. 😀😀

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