Figuring Out Life with Multiple Chronic Illnesses: How I Did It

It can be overwhelming to live with multiple illnesses, but you can create a cheat sheet that works for you. It’s all about adapting, slowing down, and asking for help.

Life with one chronic illness is complicated enough, but it gets progressively messier when more conditions join the party.

Although it’s easy for the stress of being chronically ill to overwhelm us, it’s possible to live a fulfilled life by working with your illnesses instead of against them.

I should know because I’ve been diagnosed with 10+ conditions. After perfecting my approach, I love my life in all its comorbid glory.

Join the free Migraine community!

Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

Sign up

What is a comorbidity anyway?

There are two types under the umbrella of comorbidity.

Comorbidity simply means a coexisting health condition. Multimorbidity is the presence of two or more long-term conditions in a person at the same time.

For instance, a 2019 study showed that 20–36% of those with migraine also have fibromyalgia, and 45–80% of people with fibromyalgia have migraine. This makes migraine a comorbidity of fibromyalgia and vice versa.

While these definitions matter deeply among medical professionals, it’s OK to pick one or both terms when referring to yourself. Most people will understand what you mean, whichever you choose to use. We’re not going to get bogged down by semantics here!

With a myriad of conditions that center around endometriosis, fibromyalgia, and localized scleroderma, I feel both terms apply to me.

How do comorbidities affect mental health?

In my experience, when conditions accumulate, it’s more likely that another will pop up. And there’s a reason for this.

“It is really important to understand that when it comes to the human body, nothing happens in isolation,” says occupational therapist Taylor Rahe. “Even if you just have one medical condition, it sets off a chain of reactions throughout all systems of the body, and that’s going to impact your physical health, behavioral health, and psychosocial well-being.”

As comorbidities rack up, they can affect the mind too. This can result in a sense of overall doom and gloom.

“Living with multiple medical conditions can lead to constant anxiety, especially if the person perceives one or all of the illnesses as leading to death,” says Eric Gottlieb, an outpatient program manager at Mountainside Treatment Center. “The person may have troubling thoughts about how they can live a ‘normal’ life and [have] anxiety about reaching out for help.”

This can worsen if the individual doesn’t feel supported.

“If stigma is attached to the medical condition, then the individual may feel ashamed and isolate themselves,” he adds.

Throughout years of medical trauma and worsening health, I picked up diagnoses of complex PTSD, depression, and anxiety. The cumulative stress of sickness paired with poor mental health has made learning to thrive alongside comorbidities a trial by fire.

Moving through grief

Figuring out life alongside my many illnesses started with learning how to move through the associated grief.

In a way, we experience a death — the end of a life that could have been if sickness hadn’t darkened our doorstep and obliterated our visions of the future.

I first got sick at age 9, and now, 21 years later, I’ve spent more of my life sick than well. Fear dominated my thinking for far too long, meaning it took years to recognize that grief had set up shop in my body. It’s like carrying around a 10-ton weight every single day.

The darkness of this feeling slowly eroded my self-esteem as well. I couldn’t live like a healthy person, and my life felt less worthwhile because of it.

“Some people who feel shame about their comorbidities might feel as if they are ‘unworthy’ of a healthy life,” says Gottlieb. “If you feel unworthy, then basic self-care habits will fly out the window — everything from showering to cleaning the home.”

I stopped taking care of myself by neglecting my diet, avoiding exercise, rarely leaving the house, and allowing illness to define every aspect of my life.

I had to learn how to let the imaginary life I dreamed of go and lean into acceptance instead. Sure, it can be demoralizing to live with multimorbidities, yet it doesn’t diminish the worth of my or anyone else’s life.

Learning to adapt to life with comorbidities

The first step to adapting to comorbidities is to learn about them.

“No matter what you are dealing with, I would always suggest educating yourself on the condition,” says Gottlieb. “If you are overwhelmed with where to begin, try reading research articles or talking with health professionals.”

I found solace in recording my triggers during the first 10 years of sickness. I kept a close eye on how my body reacted to everyday activities, slowly learning how to accommodate my needs day-to-day.

Slow down the pace

A crucial turning point came when I introduced pacing instead of expecting my body to function like a healthy person. This tool is crucial for anyone with chronic illness, but its importance is tantamount when managing multiple illnesses simultaneously.

“Pacing is an energy conservation technique that helps individuals sustain energy levels throughout their day as they complete desired tasks and activities,” explains Rahe. “To properly engage in pacing, you have to begin with the first ‘p,’ and that is planning, as in planning out your activities to stay organized and efficient.”

The four p’s of pacing are:

1. planning out activities
2. pacing out activities
3. prioritizing tasks
4. positioning to increase ease and safety

Pacing looks different for everyone, though it usually includes allowing extra time to complete tasks and avoid rushing.

“This often leads to excessive burnout and fatigue, and that can be dangerous, especially when you have multiple comorbidities,” Rahe continues.

I introduced it by implementing a minimum of 2 rest days per week, where I avoid strenuous activity and recuperate from social outings and work. I say no when friends and family do multiple activities in a single day.

I spread out my fun so that my body can enjoy it without paying for it in pain afterward.

Implement coping strategies

Identifying the best path forward for you and your chronic illnesses is going to require taking care of your mental health too.

As a teenager, I became so hyper-focused on “fixing” my incurable body that I neglected my mental health as a side effect. It took an immeasurable toll, and I collapsed beneath the weight of unresolved stress. This resulted in a multi-year flare-up that took all my strength to conquer.

“I cannot emphasize the importance of intentional stress management enough,” says Rahe. “Just like going to the gym to build strong muscles and bones, you need to dedicate time to your psychosocial well-being.”

Some techniques I focused on included mindfulness and meditation to stay present in my body so that I avoided dissociating from my physical or mental needs.

Too often, chronically ill people detach from their bodies to survive, and, over time, this erodes our ability to cope at all.

I also set aside at least 10 minutes daily to check my mental state to ensure that I’m not overtaxing myself.

It’s OK to rely on others

My people saved me countless times.

They pulled me back from the edge when I felt like leaping into the abyss, alleviated the physical burden of daily tasks when my body crumpled under the strain, and listened with open hearts when grief suffocated me.

“When someone is ready and comfortable talking about their medical condition, I would advise them to share with others,” says Gottlieb. “When you sit alone with your thoughts, your companion is usually the worst-case scenario.”

By letting go of the fear of being judged or considered a burden, my heart broke open and let so much love in.

“It becomes a cycle that’s hard to escape, but a friend can help lift you out of that isolation,” Gottlieb says.

I remembered that people love me for a reason, and being sick doesn’t change that. We support each other in times of hardship and celebrate one another’s wins.

Build community

Sometimes healthy people can find it difficult to connect with you because your experiences are so unique.

Reaching out to fellow chronically ill people online filled in this gap, as well as finding solace in my chronically ill sister, who has a deep understanding of our shared chronic, multi-morbid lives.

Building a support network also involves reaching out to your medical team and uniting them to work with you as you navigate the gauntlet of comorbid life.

“If you’re dealing with multiple chronic illnesses, it’s important to facilitate communication amongst your healthcare providers,” agrees Gottlieb. “When your psychologists, psychiatrists, and other providers are all on the same page, it will make for a smoother experience when you receive treatment to move you toward recovery.”

Takeaway

Chronic illness and its comorbidities aren’t a walk in the park. Still, it’s possible to love your life with multiple conditions. It just takes a little planning, support, and self-care.