Despite what popular culture and water cooler conversations may suggest, not everyone is trying to lose weight. If you have a neurologic condition that can cause weight loss such as Charcot-Marie-Tooth disease or Parkinson’s disease, just maintaining a healthy weight can be a struggle. If you are nodding right now and thinking yes, that’s me, then these tips are for you.
My tips aren’t the usual “add cream to your coffee” or “eat more snacks.” Instead, they are overarching principles I keep in mind on days when I don’t feel like stuffing another piece of protein down my throat. Perhaps they will help guide you to a healthier weight.
Bone Up on your Nutritional Needs Educate yourself about you own condition. The idea isn’t to replace your medical professionals, but to be able to ask better questions of them, understand and think critically about the answers, and invest in the nutrition plan that you and your medical team agree upon. I know that when I believe in what I’m doing, I’m a lot more likely to stick with a plan and be successful! To get started ask your dietitian to recommend a book on nutrition.
Commit to Your Plan and Your Team Once you’ve done your research and found a medical team that you trust and work well with, fully commit to whatever eating plan you and your team have devised—before you leave your doctor’s office. If you have a feeling you might not stick to the plan, let your team know immediately. For example, if you know ahead of time that you won't drink nutritional shakes, tell them. Even if you're only "cheating" and skipping that shake once... or twice... a week, that adds up fast. Not fessing up to your healthcare providers can set your progress back significantly. Take it from me, who poured dozens of vitamin shakes down the drain as an adolescent. (They tasted terrible, yes, but that was a total waste of time, money, and I didn’t get any better.)
Consider External Emotional Support Not all nutrition programs take into consideration the relationship between food, weight, and our emotional lives. It took me years to understand how personal stressors affect my eating, and how to break some of my most ingrained and harmful habits. Give yourself the best chance for success by supporting yourself emotionally during this process; talk to your doctor about resources, including support groups and private counseling. Counseling is especially helpful in learning to handle setbacks and understand how our emotions impact our diet.
Ignore the Naysayers Despite the fact that many people struggle with their weight at some point, not everyone will give you the encouragement you’d expect. If you’re underweight, they may say, “I sure wish I had that problem!” or other thoughtless remarks. When I was at my thinnest, I had one person insinuate I was anorexic, and another make fun of me for my “chicken wings” (armpit fat). There is no winning, and people will always have something to say about your weight. Choose to focus on the opinions that matter: yours and your medical professionals’.
Take the Long View Remember that weight management is a life-long process, and none one achieves perfection. At one time, I was considered clinically obese, at another I was considered clinically underweight. It has taken time to find my healthiest weight and sustain it. I am still learning as my disease progresses and I fight to keep on muscle. Regardless of where you are, be kind to yourself and celebrate your wins.
Bethany Meloche is the author of How Should a Body Be?, a coming-of-age story about growing up in Michigan, falling in love, and learning to live with Charcot-Marie-Tooth disease. Her story has been featured in the Daily Cal, the Mercury News, Mountain View Voice, and Lower Extremity Review. She serves on the advisory board for the Charcot-Marie-Tooth Association and can be contacted through her website.