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Please Understand the Unpredictability of My Chronic Illnesses

I woke up at 7 a.m. today after 10 hours of sleep already feeling dizzy, exhausted, and nauseous. My hands are both swollen, both of my feet are tingling and sore, I have a tight muscle in my neck that causes a persistent headache and facial numbness that will not release (even with physical therapy), and my SI joint is out of place causing significant lower back pain. I am 35 years old, mom to three kids, and I feel like I’m living in the body of someone who is 85. I know without even having started my day that today is going to be rough. I already feel how I normally feel at the end of the day and the day hasn’t even started.

I have multiple, chronic, invisible illnesses: autoimmune thyroid disease, celiac disease, hypermobile Ehlers-Danlos syndrome (hEDS), and the latest diagnosis, postural orthostatic tachycardia syndrome (POTS).

Living with this particular set of conditions means that life is unpredictable. Maybe I get accidental cross-contact at a restaurant and am out with GI symptoms and migraines for several days. Maybe I’m trying to take my kids to the zoo and my knee goes out of place and I’m depending on a brace and prayers to get back to the parking lot. Maybe I’m standing at a church BBQ and all of a sudden my heart starts racing, I get dizzy and out of breath, and I have to leave early. Or maybe I’m having a good day with lots of energy and we all go on a family hike and it’s wonderful. I never know what to expect, but each day I’m usually playing whack a mole with my conditions — taking care of one only to have another surface.

I’ve experienced what most of us with an invisible illness have experienced — the doubt. Medical professionals, friends, and family all have their own version of “don’t you think it’s all in your head?” Let’s address this. All of these diseases have diagnostic criteria of some sort, and even though you can’t see them the way you can see a broken arm, it doesn’t mean they aren’t real. I think what people have a hard time wrapping their heads around is the variability of the symptoms and the severity of the symptoms from one day to the next. I can have a good day, a good week, or even a good month where I’m functioning at a higher level. You may see my house looking a little cleaner and social media posts about the fun things I’m doing with my kids. But there are times when things are debilitating, when my husband is picking up the slack and my mom is coming by to help me clean my kitchen.

You also have to understand how we think of our day. Instead of carefree planning, we plan based on how we are feeling. There are some “have to do” tasks every day for me — music lessons for my kids, getting them to school, my part-time job, and making meals.  There are days when that is all I can do. What I do during the day becomes very much a prioritized list. I am often in a place where I know if I have a workday it means my kids will get less attention because I’ll be spending my evening in bed. Every single thing I do usually means I won’t have the energy or ability to do something else. I also know that I often will pay the piper later for doing too much. Yes, I can push myself — I can do more than I physically feel capable of — but it usually ends with me having to give up doing anything for several days. Recently I thought I’d try Pilates again — something I enjoyed doing years ago — so I did a beginner YouTube video for 20 minutes one morning. It took me three full days to recover.

I want you to know how hard most of us are working to improve our health. That’s why we go to doctors as much as we do. I will be going back to physical therapy for the first time since COVID locked us down in a few months. I am constantly talking to medical professionals and following their recommendations with exactness in an effort to improve my ability to function in my daily life. No one likes living this way. I want to walk around Disneyland in 90 plus degree weather with my kids and be able to stay hydrated and healthy just by drinking water. I don’t want to be the person always leaving early, always saying no, and always staying home.

I remember 10 years ago when my illnesses were less severe, I was the person who judged someone without thinking twice. I guess I’m asking all of you to do something I didn’t do — to not judge us. To see us as people who are doing the very best we can every day.  You may have someone you know who often says no when you invite them to activities. Maybe you know why, maybe you don’t; invite them anyway. You may see someone in your neighborhood who is having a hard time keeping up on their yard work. Maybe you know why, maybe you don’t, but offer them a helping hand anyway. And if one of us opens up about our struggles, don’t doubt us because you saw us at the park with our kids or on a hike with our friends. Believe our experiences. When you see us having a good day, out and about, smiling and energetic, instead of questioning the reality of our diagnosis, celebrate with us. Those days are the days we work for, hope for, and pray for and we celebrate each and every one.

Getty image by RA Kearton.

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