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  • Writer's pictureChloe Smith

Flare-Up After Flare-Up: Managing Multiple Chronic Illnesses

It's 5:00 a.m. and your body is blaring its alarm, forcing you up for the day. Painsomnia has unfortunately befriended you yet again, waking you up throughout the night. Your chronic illnesses are relentlessly stealing from you, robbing you of sleep, energy, painless days, strength, and joy. You used to be able to adapt to the level of pain and other symptoms while appearing to live a ‘normal young adult life’. Now, look at you. If you try, the bags under your eyes can’t even be covered with concealer. The frequent mascara-under-the-eye look doesn’t help that case either. Your joints are screaming for their life, while there is a headache that has been residing with you but not paying rent. Right when you think your body has calmed down, everything acts back up again. It’s a full-time job living with multiple chronic illnesses. Getting out of bed is a task in itself, going to the bathroom, cooking and preparing food, eating meals, bathing, putting on clothes, physical therapy, putting on braces and compression garments, scheduling, preparing for, and going to doctor appointments, communication with providers—the life with chronic illnesses feels uncompromising.

I was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), a connective tissue disorder, after experiencing chronic pain for 4 years and random flare-ups throughout childhood and my teenage years. I've also been diagnosed with a form of Dysautonomia called Vasovagal Syncope. I've developed chronic pelvic pain in addition to other chronic pain in my spine and other joints. I also experience chronic episodes of vertigo. The mix and match of all of my chronic illnesses makes me feel like I'm juggling chainsaws, knowing if I drop just one, they will all collapse on me. My symptoms can trigger each other, ultimately leaving me exponentially worse than I was before. Living with chronic pain for years is exhausting, never knowing if, or when, it will get better. Focusing on the pain and other symptoms sometimes takes away from the rest of my life. However, covering the symptoms with a smile leaves me exhausted. Months of tracking symptoms also don’t account for the severe symptoms you don’t know are going to crash down on you tomorrow. 

How do I juggle chainsaws, though, if there are more than I can catch at once? What can you do when one body cue tells you to do the opposite of another? My joints need lots of rest, but they also require plenty of movement with stability. This causes conflict with my other symptoms. When I am up and moving, my dysautonomia kicks in. Even if my joints weren’t done with the movement, they had to take one for the team and give in to the presyncope I was experiencing. My joints may not be happy later, but my body as a whole needs to take care of the most severe symptoms before it can tackle the others. There may be days stuck in bed because of an episode of vertigo, creating a wave of stiffness and pain throughout my body. Or weakness, causing muscles to spasm and limbs to tremor, making any task difficult to accomplish. It makes me feel the symptoms are in control of me, and not the other way around like it should be. The flare-ups after flare-ups drown the sounds of the rest of your life out. But that doesn’t mean you should live in constant fear of them. 

Living life flare-up after flare-up is a tricky balancing act, and after repetitive failed attempts at balancing my chronic illnesses, it made me feel less and less of a human. I would skip out on events in fear of a flare-up, never knowing when symptoms would change that day. I would stop doing my hobbies, knowing it would cause more pain even if it did make me happy. I eventually realized that regardless of symptoms, I still needed to find the joy to add to my life. While I added the secret ingredient back into my life, I learned it was easier to grasp onto the positives of my day, even while experiencing what a person without chronic illnesses would consider an emergency, if they experienced it for a day. I wanted to laugh with my friends, not watch them laugh together on their story. I want to smile and join in on conversations, not sink into my chair and isolate myself from it. I want to go for a walk and bask in the art Earth provides, not sit at home staring at my popcorn ceiling. Living with multiple chronic illnesses does not mean you do not deserve to feel the joys of your day. 

My body and mind have learned to adapt to a semi-structured daily routine, preventing some severe symptoms. While completing tasks, paying attention to body cues is necessary for knowing my body’s boundaries and limits. Breaks are very much needed and helpful for restoring energy and relieving pain from a particularly intense activity or conversation. Before I established routines, it felt like a constant race catching up to my body. Now, with incorporated body breaks and other management techniques, dealing with a sudden severe day is less taxing than when I didn’t have the adequate tools to pick myself back up. Floor time, couch time, and bedtime are written in my daily schedule now, to allow myself daily breaks, while feeling productive as I check it off my list every day. This routine has helped me manage my multiple chronic illnesses over time. Regardless of what symptoms you experience, how many diagnoses you have, and how far beyond the pain scale you’ve gone, you deserve to feel the tingles of joy that every other human experiences. 

The path will be different for the spectrums of everyone’s chronic illnesses and create some routine and consistency to rediscover some of the joys that we used to be able to easily chase after. It can be a domino effect of symptoms, so the challenge can also be about maintaining the positives in your life during flare-ups. The positives get washed away when you’re experiencing frightening symptoms. But you still deserve to be yourself. You deserve to feel human. You deserve to have your multiple chronic illnesses managed or at least seen. I’m slowly learning to find my balance in managing my multiple chronic illnesses, even if that means a morning stuck in bed or an unprecedented nap. Finding the positives amidst the pain can be challenging, but maintaining a routine and balance can help as you learn to cultivate resilience and find moments of joy even during flare-up after flare-up.

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