What it's like to live with an invisible illness

We all suffer, so erring on the side of kindness can cure a lot of wounded hearts.

Summer 2020: I was 3 months postpartum and in the throes of both my autoimmune flare-ups and severe postpartum depression. But I look happy. I look fine. Photo credit: Ani Wallach

I don’t speak much of my autoimmune conditions. I never write about them. The reason isn’t that I’m trying to hide behind them or deny their existence. It’s that I haven’t quite found the right words to describe what it’s like being inside a body that hurts or is feeling some sort of symptom almost constantly —a body that also appears to be healthy and thriving to others.

Not long ago, I was standing in line at church to see a priest for Confession, and a wedding had just ended. The bride and groom were just wrapping up their classic photos with family at the altar, and who I assume was either the mother of the bride or the groom hobbled past me. She was hunched over terribly, so much so that she could not raise her neck to stand up straight, and her gait was unsteady, as if one leg or hip were shorter than the other.

I felt sympathy for her and also grateful for my mobility. It’s easy to be patient with someone who is clearly disabled or sick, just as it was for me to see this woman and feel my heart reach for hers. It’s the same with people we know who have cancer, and we see them weeks or months after they’ve begun their terrible rounds of chemotherapy. They are gaunt, bald, and weak. Those in wheelchairs, too, are visibly limited in mobility, and we can grant them a stitch more grace and kindness and patience when they are gruff or sigh in the pharmacy pick-up lane.

When I was a preteen and my younger brother was diagnosed with Obsessive Compulsive Disorder and Bipolar Disorder a few years later, my mom would often lament, “When someone tells you they have a heart condition or diabetes or cancer, you instantly care and want to help them. But when someone has a mental illness, you can’t see it and it’s easy to dismiss it as imaginary or maybe just a person who is lazy or odd.”

I’m disheartened that we still don’t live in a society that fully grasps what mental torments some of us go through. I just finished reading a quirky but intriguing memoir by Mark Vonnegut (yes, Kurt’s son) called Just Like Someone Without Mental Illness Only More So. On this topic, he wrote:

A world without prejudice, stigma, and discrimination against those who have or who are thought to have mental illness would be a better world for everyone. What so-called normal people are doing when they define disease like manic depression or schizophrenia is reassuring themselves that they don’t have a thought disorder, that their thoughts and feelings make perfect sense.¹

That’s a lot what it’s like to be fully cognizant that you look fine to everyone else, yet you cannot deny that there is something a little off about what you are feeling on the inside. I’m not just talking about thoughts and feelings, though these often —very often —tend to correlate with chronic pain and illness.² Wouldn’t you be discouraged if people expected you to be perfectly ambulatory, but your hips felt like ice picks were stabbing them constantly? Or your knees ached so badly that to walk or stand for a long period of time was impossible? Or your degenerative disc in your lower back from giving birth to five kids meant you could not stoop down to get your toddler boys dressed or showered without the possibility of throwing it out altogether?

Here’s what I will say about autoimmune disease in general: it affects your entire body, potentially every system. When you are diagnosed with one autoimmune condition, it is likely that you either already have, or will have, others. The specific diagnosis is related to where your body begins to attack itself, so, in my case, it’s endometrial tissue growing inside my rectum (endometriosis) and nodules on my thyroid that have thrown my hormones completely out of whack (Hashimoto’s hypothyroidism).

The thing is, you can’t really tell people, “Oh, it’s just my Hashimoto’s acting up today,” because they will likely be confused. They don’t have enough information —unless they also suffer from the same thing —to understand what you are talking about. So you learn, after a while, to just keep quiet about it and muddle through the flare-ups that happen when your oxidative stress (read: constant, unrelenting stress) is high.

There’s enough information about diabetes and heart conditions and many types of cancers that, if you tell someone, “Oh, I’m having a bad day from the chemo” or “My blood sugar spiked so high that I had to get admitted yesterday” or “My doctor told me to go to the ER right away because of my a-fib,” virtually no one will question it. In fact, not only will you garner instant sympathy, but you might also receive some extra help in the form of meals or housekeeping or babysitting.

This is not a tirade. It’s my observation. I am not suggesting that those with diabetes or cancer or heart disease do not suffer from depression or invisible aches and pains, because I’m sure they do. It’s just that a) the stigma against these has been drastically reduced due to the vast amount of medical information available to the public these days, and b) many times their struggle is worn on the outside, rather than the inside, of their bodies.

I’m guessing that many of you reading this recognize my point: that many of us are functioning as best as we can with terrible hidden pains. Some emotional. Some physical. Often one causes the other. For me, depression rears its nasty head when I am dealing with an autoimmune flare-up, which includes inflammation, joint pain, muscle aches, migraines, rashes, heart palpitations, sometimes asthma. I often contract a cold during these times if I am unable to adequately rest (because: five kids). Otherwise, if my physical pain is minimal or I even wake up to feeling fantastic, I can move through my day without feeling down.

But here’s the thing all of us already know, and I’m going to remind you of it here: Be kind. Everyone you meet is fighting a battle you know nothing about.³

Whether it is something you can see and identify or not, every human suffers something. And wouldn’t life be easier for us all if we tried, in some small but significant ways, to be just a bit kinder and more patient with everyone we encounter today? To smile at the scowling stranger in the grocery store? To take a deep breath and let the guy who cut you off on the highway have enough space in front of you? To compliment the cashier who nervously apologizes for the wait after stalling for only two minutes?

What if we reframed the way we think about others? Instead of assuming that people are just mean, rude, and impatient, let’s try to give them the benefit of the doubt —and to recall a time or two when we gave the impression that we were mean, rude, or impatient because we were worried we’d be late in getting a sick kid to the doctor; or our mom just had major surgery and we’re rushing to the hospital; or we’re just dealing with the loss of a spouse or child and we’re hurting really badly.

Pain is pain, and we all experience it. I think what we choose to do with what we suffer makes the greatest impact, on both our lives and the world at large. You can have your bad day, but please give me mine. And when it’s my turn, I hope you smile at me like I did to the person in front of me at Aldi last week who looked like he was having a bad day.

Let’s move beyond tolerating what we, and others, must suffer. Kindness involves a hefty dose of patience without judgment, and sprinkling it like confetti (yep, I’m giving you another kindness cliche here) just might shine on someone who needs it the most.

1. p. 166

2. See https://www.mayoclinic.org/diseases-conditions/depression/expert-answers/pain-and-depression/faq-20057823 —but there are a slew of articles, including scholarly, on this topic.

3. Origins attributed to Ian Maclaren: https://en.wikipedia.org/wiki/Ian_Maclaren