Tapping into the power of a positive mental attitude with chronic illness

This week has been incredibly busy for my family and me. It started on Monday with an all-day field trip outdoors in the bitter cold, then cheer practice that evening. Next was coaching cheer at a chilly football game on Tuesday, and a big event on Wednesday that required 10 hours of standing in the cold and sitting in a hot, muggy venue surrounded by thousands of people.

For an able-bodied, healthy person, that probably just seems like a busy few days. But when you have multiple chronic illnesses like I do, a three-day stint of go, go, go is like mentally and physically preparing for a triathlon. It’s not a feat for the weary soul!

That’s why I wanted to talk about a central idea: the power of a strong, positive mental attitude. I know I couldn’t have attended those exciting, exhausting, and physically demanding events — especially coming out of a prolonged flare — without deciding to be determined, prepared, and positive. I wanted to be part of each event and make those days successful and memorable.

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With my body hurting all the time, as it does with Ehlers-Danlos syndrome, my energy can be pretty limited. I also have mast cell activation syndrome and postural orthostatic tachycardia syndrome, so I deal with chronic allergy-type symptoms, food intolerances, gastrointestinal issues, blood pressure fluctuations, and extreme heart rate variability, to name a few. Dealing with these issues daily, on top of life’s stresses, a big family, and numerous responsibilities, can leave a person sapped and feeling like their body is in a constant state of fight-or-flight response.

I strongly believe in the benefits of a positive mindset. When I was growing up, my father was the vice commander of our county’s search-and-rescue team. The lessons I learned from his training and the time I spent around the team instilled invaluable lessons in me — namely, that maintaining a positive mental attitude is one of the top survival tools. I may not actually be lost in the wilderness, but some days, living with these conditions feels like a strategic survival mission!

From what I’ve experienced in life and read in medical literature, our mindset plays an underrecognized role in how we handle tough situations. They say our brain and gut are deeply connected, and stress can affect digestion, pain tolerance, sleep, and the nervous system. With my body already stressed from these conditions, more often than not I feel stuck in that heightened state of fight or flight rather than the restorative rest-and-digest state of the parasympathetic nervous system.

If I were to compound that stress with a constantly negative outlook, dwelling on the pain and disease, I’d only be making an already difficult situation harder on myself. I’d rather put that energy toward finding the good in each day. That’s not to say a positive mental attitude will fix what’s going on inside my body — if only it were that easy! But I believe negativity costs us more than we realize, especially when we’re already running on limited energy.

So, going into those three busy days, I made sure to listen to what my body needed. I stayed hydrated, kept mineral salts handy for my water, ate nourishing foods instead of processed foods, and went to bed earlier to get more rest. I also took deep, diaphragmatic breaths when I felt tense. I tried to laugh more, appreciate the beauty in each day, and not let physical discomfort steal the enjoyment of being there. When I felt dread creeping up because I knew the potential cost, I chose to tell myself it was going to be a good day and that I’d get through it. And you know what? I really enjoyed those three days!

Looking back, those days feel like they took an entire week to pass, and I’m so thankful I got to make those memories with my family. I’m not saying it’s always easy to stay positive during life’s trials and storms. Some days are completely miserable, and it’s OK to acknowledge what you’re going through mentally and physically, and to give your body the love, grace, and rest it needs.

But I believe we can choose how we approach difficult days. We can either dwell on everything going wrong or try to find the little joys in life that keep us going. Life is what we make it, even when it’s not easy. Living with chronic illness definitely isn’t easy, and there will be days when our bodies have other plans. But maintaining a positive mental attitude is one of the most valuable tools we have for getting through those exhausting days.

I certainly don’t want to spend what little energy I have being miserable about things I can’t change. I’d much rather put that energy toward enjoying the life I have, even with all of its challenges.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.