I don’t wear bracelets. I don’t do charity walks or 5ks. I don’t even talk about “it” that often, even though I’ve lived with “it” for half of my life and will do so for the rest of it.
I’m your colleague who is living with an invisible illness. Over 58 million Americans aged 18-65, a full third of this population group, live with one or more chronic illnesses. In my case, it’s a rare, multi-systemic auto-immune condition referred to as granulomatosis with polyangiitis (GPA).
For several decades, a GPA diagnosis meant certain death, but thanks to research by a certain Anthony Fauci (you may have heard of him) of the National Institutes of Health’s Laboratory of Immunoregulation, almost all of us who contract GPA are able to live productive lives due to advances in immunosuppressive therapies. There are two forms of GPA: one which aggressively attacks small blood vessels to sabotage the functioning of the lungs and/or kidneys, and another, so-called “limited” GPA, which is more of a “death by a thousand cuts” in all areas north of the lungs.
I’ve endured multiple flares of limited GPA and spent very few of the last twenty-four years in a true period of remission. I can no longer remember how many surgeries I’ve had, as that number hit double digits years ago. The illness and side effects of the quite powerful and toxic medications which are used to fight it have caused me to lose hearing in my right ear, develop severe cataracts in both eyes in my mid-40s, and entirely lose my sense of smell. That’s just the beginning.
I spent the better part of two years living with never-ending headaches resulting from inflammation of the lining in my skull. My nose has collapsed twice (once after being rebuilt by a plastic surgeon). For the last eight years, I’ve lived with the never-ending specter of my airway narrowing right around my vocal cords, sometimes to where the “pipe” looks like a coin slot. As you can imagine, speaking and breathing can be difficult.
Finally (I hope), I’ve dealt with co-morbidities brought about by medications and weight gain, including diabetes, hypertension, and high cholesterol.
When I was first diagnosed in September 1997, I was finishing my college degree and working two jobs. Many people told me to quit working, quit school, or even… quit everything. During those nascent days of the internet, I found a common thread among the 60% or so people who had died from the illness: their families shared that after the diagnosis, their loved ones went home, took to their beds, and never really recovered.
I was determined not to let that be my story.
My doctors will tell you that there are a few key elements to my survival all of these years. First among those is my will to live. I see purpose in my life and especially how I share that life with my family and friends. Second is my rather immense sense of humor and my ability to see the bright side of life even in the darkest and most painful moments. And third, I have always treated my work as a refuge: a place in my life where I could escape being a patient.
All these years later, I have achieved some measure of success professionally, as I choose to define that. I participate as an executive in two companies, one of which I own, and I’m thrilled to say that I love my work and the people I get to do that work with—colleagues and clients alike—every day. Those who know me best might describe me as open, yet guarded about my illness, and there are good reasons for that.
Fear of Weaponization
The companies where I ply my trade currently are idyllic in many ways. But, I’ve spent plenty of years in my career highly suspicious of some colleagues and their motives. It’s hard to keep an illness private or invisible when you wear more and more of its scars over the years, but you can find ways to do it if that means your professional survival.
In my former professional life, the highly-competitive corporate culture in which I worked led to a dynamic that seemed to create a lot of “winners” and “losers” and lent me a strong sense of foreboding that any weakness I revealed could one day be used against me. So, I’d only share the details of my illness in quiet conversation with close, trusted associates, while the subject was never broached at all with others.
This can be especially scary when you question the loyalty of your manager or leader: anyone with whom you have the short end of a power relationship. You never want to see something weaponized against you that should have been under your control. While I never experienced the direct weaponization of my illness, I did sometimes wonder, especially in situations where I sensed an adversary rather than an ally, how my illness was discussed behind closed doors.
Neither Pitied Nor Idolized
As I have opened up, even sparingly, to colleagues and supervisors about GPA and my life with it, I’ve seen the development of a couple of different relationship dynamics: being pitied or being idolized.
My parents instilled in me a tremendous work ethic and confidence in my ability to meet virtually any challenge. I’ve never sought nor entertained pity for what I’ve encountered over my lifetime with GPA. In my mind, there’s always someone else out there who has it worse than me, whether that’s a child with a brain tumor or an older person dealing with dementia. No matter how I’ve suffered through the years, I have always thrived in some other way.
But that doesn’t mean I want you to idolize me or find me inspiring. Like almost anyone else you meet at work, I want to be recognized and honored for the quality of my contributions, the innovation of my ideas, and all the aspects of my work that try to change the game for the better. My validation comes from all of that, not how I got through my daily symptom management.
It’s Exhausting, and There’s Never a Good Time
It’s so tiring living with a chronic illness. Just the medications, doctor’s appointments, nutrition and wellness concerns, and keeping your family and friends in good spirits when they’re worried like hell about you can be debilitating. Those of us who live with these illnesses are asked to play an intense mental game: one in which we are beset with anxiety or depression, or worse still, plagued by the uncertainty caused by a bad set of lab results, the development of a new symptom or co-morbidity, or the revisiting of symptoms you thought you had nailed down (as I write this, I am dealing with the recurrence of subglottic stenosis, the narrowing of the airway near the vocal cords, for the first time in two years).
When you’re sick, meaning living with active symptoms, it’s quite exhausting to talk about illness in a professional context. And when you’re relatively well, as the body takes an easier turn on the inflammation cycle or you’ve achieved remission, you just want to L-I-V-E. As you can see, for me at least, there’s never a good time to talk about GPA in the context of casual or curious inquiry. If you’ve invested in me, I’ll invest back in you, but I’m not going to cheapen my experience, in any direction, for the sake of idle water-cooler talk.
To those of you who do wear the bracelets, participate in 5ks, and choose an open life as a survivor, let me close by saying how much I love you and embrace those choices as your own.
In writing this piece, I’ve obviously blown the lid off of the privacy I’ve often worked so hard to protect. Here’s why: I want others in my situation to own their own lives, how and when they share their stories, and with whom. I also want to illuminate others, as many have illuminated me on my journey of awakening with regard to diversity about how some of us who are living with invisible illnesses think and feel about these issues.
That kind of empowerment and enlightenment is worth the price of my privacy.
For those of you wondering why you should care about this corner of the world of diversity, keep this in mind: just as you’ll find that people of different backgrounds, ethnicities, abilities, and identities bring powerful perspectives and thought processes, often shaped by their experience and the way they’ve handled adversity, so do we. Invisible illness affects people who are also intelligent, smart, incisive, efficient, and prolific.
How can you help your teammates living with invisible illness at work? As an owner, executive or manager, that might mean greater flexibility with my work schedule and offering paid time off rather than sick days, which those of us with chronic conditions may burn through early in the year.
A recent Harvard Business Review piece from Alyson Meister and Victoria Worley outlined some ways that you can support your colleagues who live with chronic illness.
- Lead with empathy: Your feelings on this subject may be tricky, and can sometimes include pity or resentment. When a coworker is granted accommodation for a chronic condition, practice compassion, and think how you would feel if the company empowered you in similar circumstances.
- Challenge and update your assumptions about what’s “normal”: many of us tend to hold beliefs such as “that condition could have been prevented” or “that person doesn’t live a healthy life.” Many of us inherit our (bad) luck with invisible illness through our family histories, while others (like myself), live with illnesses whose causality is simply unknown or not traceable.
- Ask questions and be open to adapting and learning: let’s all be better about not shoving everyone into a box of our making. When we empathize, that should occur at the individual level based on what our individual colleague needs. If I need you to wear a bracelet, I’ll let you know. But knowing myself, I probably won’t.
Brian Castle is an entrepreneur and executive based in Charlotte, NC.
