“But You Don’t Look Sick” — Living With a Chronic Invisible Illness

y-a-n via Flickr

By Jessica Roberts, Intern 2015

“Mom,” I choked into the phone. “Mom, I —”

Mom, I can’t breathe.

Mom, I’m clawing at my legs and arms, like I’m trying to break out of my own skin.

Mom, I think I’m dying.

“Jessica? Jessica!” My mother’s voice carried through the phone and across the country. “You’re OK. Just take a minute. Breathe. You’re OK.”

I gasped, heaved, and gave into the silent sobs filling my chest. It hurt too much to keep them in — so I wailed, rocking back and forth on my living room floor, while my dog and cat shot panicked looks at me.

One minute. Two minutes. Five minutes. Done.

Anxiety was my silent companion, so stealthy that I didn’t even know it was dogging me until my mid-20s, when worrying became obsessing, which turned into unpredictable and explosive panic attacks. They were triggered by seemingly innocuous things — the day I phoned my mother, certain I was having a heart attack, my dog had overturned the garbage can while I was out.

When Chronic Illness Is Invisible

Thanks to a psychologist who helped me identify, name, and manage my anxiety. I no longer feel like I’m white-knuckling it through life. And now, most of the time, my anxiety plays a minor background role, instead of the antagonist in my life.

However, even if an illness is invisible to others, it is constantly present to the person living with it. One of the main challenges of living with a chronic condition is striking a balance between protecting your privacy and wanting others to acknowledge how your diagnosis and symptoms impact what and how much you can do on any given day.

Anxiety is only one kind of chronic, invisible illness. Not everyone who struggles with disordered eating, cancer, autoimmune disease, or congenital disorders is visibly ill. Which makes it all the more easy for us to look at them and think, but you don’t LOOK sick?

Still, even if looking ill isn’t a constant, managing a chronic illness is. I spoke with two people, Pia Guerrero and Mike Epstein, about their experiences living with an invisible condition. They both agreed on the same important point: The first step is to keep living.

Focusing on What You Can Do

When Pia Guerrero was only 13 years old, she woke up with swollen knees. Seemingly overnight, she had transformed from a talented ballet dancer to a person living with lupus. By age 15, she had been through several rounds of chemotherapy, steroids, and a dialysis-type treatment called plasmapheresis before receiving a kidney transplant. Her lupus also left her with a number of secondary conditions that affect her intermittently, including osteoporosis, fibromyalgia, chronic fatigue, interstitial cystitis, and skin cancer.

For Pia, life with chronic invisible illness means having to make a choice about what she can physically handle doing on any given day. What can she say yes to? What must she say no to? Is she comfortable sharing why she’s canceling lunch, or a meeting, or a date? If not, can she tolerate the discomfort of letting someone else think she’s a flake, inconsistent, or unreliable?

She also explains some of the frustrations shared by those living with chronic illnesses. First, there is the question of who to invite into your confidence. Not everyone knows how to respond, and many react in damaging or sometimes insulting ways. When you explain to your friend, colleague, or boss how your condition compromises your energy, some people will doubt it is as bad as you describe. “Can’t you just come and see how you feel once you get here?” they might ask, not knowing that doing so could rob you of a week’s worth of mobility.

Then there are the people who think they know exactly what you must do to cure your illness, and are just thrilled to tell you. “You just need to get some more sleep / exercise more / find Jesus / eat a macrobiotic-low-carb-organic diet / slow down / push through the pain,” these sudden experts advise.

Or, they engage you in the Comparison Game: “Your fibromyalgia sounds rough. I know my body really hurts when I don’t get enough sleep.”

Pia told me about losing friends because of her invisible illness. Some just stopped inviting her places, assuming she wouldn’t want to go, while others thought she was exaggerating her pain and limitations. A handful of folks have even told her that fibromyalgia, a debilitating nerve disorder, is just in her head.

Her body image was deeply disturbed for years, since the side effects of her medication included swelling, weight gain, thinned skin, and stretch marks. These changes discouraged her from seeking out new social opportunities, as she was self-conscious about her body.

And most reprehensibly, there are the so-called “care providers” happy to take the money of individuals desperate for some relief from the ongoing pain. Pia recounts her own experience with a naturopath who promised to cure her fibromyalgia. Some months and $6,000 later, Pia was still in pain, and the practitioner admitted that her program didn’t always work for everyone. “As long as you need therapy, someone is making money,” Pia observes.

Abandoning further expensive alternative medicine therapy, Pia’s dogs act as one of her main coping strategies and sources of support. They get her out of the house, shift her focus to caring for others, and comfort her when she is having a particularly difficult day. Pia notes gratefully that it goes beyond being a dog owner; her dogs are “so soulful.” Her dedication to her pets is just one example of her tenacity, suggesting one effective way to manage a chronic illness is to appreciate what your body can do.

Living with a debilitating illness that robs her of bodily and cognitive energy, Pia made it a goal to find and maintain her new normal. For her, it was about participating as much as she can, when she can. Her commitment to continued achievement is admirable.

It turns out Pia is capable of doing more than most, chronically ill or not. In addition to serving as the executive director for SheHeroes and working as an executive coach, she is the founder and editor of Adios Barbie, where she brings a unique perspective to the body positivity and intersectional identity conversation. For her, it’s not about feeling or celebrating bodily beauty, but rather feeling gratitude for what your individual body is able to do.

Life with a chronic illness is frustrating, challenging, and requires flexibility. But it does not have to become the locus of a person’s identity. As Pia points out, “So many of us don’t want our illness to be the main attraction.”

“A Good Day Is Just Living”

Mike echoes Pia’s words, explaining, “A good day is when you can focus on your day and not on your illness … A good day is just living.”

For Mike, who was diagnosed with multiple sclerosis (MS) in October 2013, learning he has a chronic illness has not changed how he sees himself. He suspects that the first appearance of his MS was five years before his diagnoses, in 2008, starting with numbness in his right leg, followed by explosive knee pain. Over the next few years, the pain spread up into his back, shoulders, head, and chest, radiating down to his fingers and toes. While Mike admits to being angry upon receiving his diagnosis, today he sees MS as something he lives with, instead of something controlling his life. He approaches his condition as a challenge: “It may be a challenge I can’t necessarily win, but I don’t plan on losing.”

Mike’s attitude highlights one of the key ways people can effectively manage their chronic illnesses — with a sense of humor. When asked if he would like to see more representations of MS and people living with it in the media, Mike quips, “I don’t think the news will discuss the topic unless one of the Kardashians is given an MS diagnosis.”

As he explains, the condition is extremely individualized, and its symptoms and severity range dramatically. Instead of adopting a “why me?” attitude, Mike considers his MS as just one of many ways a person can be reminded of their mortality. “I just have a named accomplice,” he notes.

That’s not to say even the most positive-minded don’t get frustrated. Mike’s symptoms are triggered by cold temperatures, holding shaking objects such as a steering wheel or a lawn mower’s handle, and not getting enough sleep. He concedes it is difficult knowing that his condition can never improve, only worsen, and that “for the most part, I am in pain.” However, he credits his wife and three children (“the reasons life makes sense to me”) as his source of strength, comfort, and motivation, while continuing to work as a high school U.S. history teacher.

Staying Visible While Managing a Chronic Invisible Illness

Mike, Pia, and I, along with others I know, share a similar outlook on what living with a chronic, and often invisible, illness means. It can govern your life only as much as you let it. Yes, there are certain bodily, emotional, and cognitive limitations that come with illness. But symptoms can be acknowledged, managed, and worked around. Both Pia and Mike mention how their conditions have made them more empathetic to the suffering of others, a point of connection to friends and strangers both.

Or, as Mike so eloquently puts it, “Any given person might be battling MS, depression, anxiety, loneliness, low self-esteem, or any number or combination of ills that can make life dark. One person’s struggle is no less significant than someone else’s.”

Chronic illness isn’t a death sentence or a private humiliation, a marker of “other” or a personal failing. It’s part of the individualized experience of living, an element that both differentiates and connects people, through shared pain, perseverance, and accomplishments.

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