Keeping Secrets: Why We Don’t Talk About Chronic Illness

We’ve all seen the t-shirts. Sometimes they boast a vividly colored ribbon representing a certain type of cancer. Or they announce the name of a specific disease followed by the words “awareness month”. And occasionally, they’re less specific but just as bold: “Proud Owner of a Broken Immune System!”

Do you want to know how many of these I own?

Zero.

Why?

Good question.

I’ve given this a lot of thought.

I belong to a terrific support group and occasionally someone will be promoting a t-shirt with the name of my condition. There are variations, but the shirts usually read, “Dermatomyositis Warrior”.

Ugh.

If you weren’t sure how to pronounce it, don’t feel badly. It’s a mouthful isn’t it?

I’m two and half years into my relationship with DM (that’s what we call it – because, well, it’ so much easier to say and spell….) and I still don’t know which part of the word to emphasize.

But the truth is that even if I had a disease that was more common (or easier to pronounce), you wouldn’t find me “advertising” it directly.

It can be cathartic to be open about how we feel. Why is it so hard to do?

I was diagnosed with Non-Hodgkin’s lymphoma, a blood cancer, in 2004.

Coincidentally, it was the same year that Nike launched the yellow silicone wristbands in support of Lance Armstrong’s Livestrong Foundation. Armstrong, a cancer survivor, was pursuing his sixth Tour De France title.

The bracelets were everywhere. I don’t recall who gave me one. But I wore it 24/7. It became part of my wardrobe, and I wore it on the same wrist as my watch. For years. Until it broke.

I can’t recall if Lance had fallen from grace before or after my bracelet died a natural death from wear and tear.

It wouldn’t have mattered. Because in some way, that yellow bracelet was a talisman. It gave me hope and it made me feel strong.

Three reasons why we don’t talk about chronic illness

You might wonder how my willingness to wear the Livestrong bracelet is any different from otherwise being open about my disease.

It was different because 80 million people were wearing them. They weren’t all fighting cancer. They were supporting the fight against it.

So even though I wore my bracelet, I could so with a good degree of anonymity. I could just blend in.

And that became the question. Why the need for anonymity?

For those of you who are comfortable with being open about your chronic illness, I applaud you.

Whether it’s a willingness to openly discuss it if the topic comes up or a willingness to bring it to peoples’ attention to help create awareness and understanding, those are good things.

But I know at least three reasons why many of us hesitate to talk about our chronic illness.

1. We don’t want to be perceived as being weak

It’s such a loaded word. Because chronic illness is chronic – not a temporary situation, it’s not uncommon for us to feel as though it compromises who we are.

We don’t want to be regarded as physically weak or incapable.

I think we’re evolutionarily wired this way. Think back to the days of the hunters and gatherers.

Can you imagine an injured or ill hunter making his or her limitations apparent? I didn’t think so. After all, we’re wired to survive.

And we don’t want others to see us as too emotionally weak to push through our pain, our fatigue, our very real physical limitations, or our emotional turmoil.

What if people think we’re lazy? Or worse yet, faking it?

So if we don’t talk about our chronic illness, or if we try to hide it in whatever way we can (even if it means that we adjust our life accordingly), we do it because we think we can camouflage what’s happening. And then no one will judge us.

And maybe we can mask it, for a while. But even if we’re able to fool everyone else, we’re not fooling ourselves.

2. We don’t want anyone to pity us

It’s hard to reconcile the emotion of wanting someone’s empathy – but not wanting their pity. But there is a difference.

Empathy is about compassion, about trying to understand what someone is experiencing.

Pity is about feeling sorry – without attempting to gain a deeper understanding.

But it’s that deeper understanding that results in real emotional support. It involves listening and helping the person explore and share their feelings. It serves a useful purpose.

I recall going to pick my girls up from school shortly after my cancer treatment started. The principal saw me and came to talk to me.

She was a very kind and loving person, and I saw tears well up in her eyes when she told me that she was so sorry and felt so bad that I was going through this.

I appreciated her concern, but her tears were also reminder of the seriousness of my condition. I experienced some very mixed emotions: gratitude for her care and concern, and sadness because the tears chipped away at my hope.

I shouldn’t have felt that way, but when we are ill, our emotions – like our bodies – can seem fragile.

3. Sometimes we need to forget that we are chronically ill

We have good days and we have bad days. Either way, we learn to live with the knowledge that we have a chronic illness.

I had a lot of bad days – some of them happened long before I was diagnosed. Chronic illnesses and autoimmune diseases are like that. Vague in their symptoms. Insidious in the way they slowly but surely steal our health.

There were bad days once I was finally diagnosed, too. I’ve learned that even the successful treatment and management of chronic disease isn’t a linear path forward.

We want to forget that we’re ill. On the good days, sometimes we can.

We want – and I believe we need – to allow ourselves to deny that we are facing lifelong illness, even if it’s just for a day.

No one wants to live under the dark shadow that a chronic condition can cast over our shoulder.

If I don’t talk about my chronic illness, I can give myself the gift of temporarily forgetting about it.

Maybe it’s hard to talk about our chronic illness because we’re still trying navigate the emotions of grief and anger that accompany it.

Sometimes we need to remind ourselves that what we think others may perceive as a weakness is not weakness at all. Learning to live well with chronic illness takes grace and grit. It takes strength.

We don’t want pity. But what we do want is for others to try to understand that we can’t fix the hand we’ve been dealt, but we can play it the best way we know how.

And when we have those days when we choose to forget, we are giving ourselves the gift of a reprieve from the weight of the emotions that we are still coming to terms with.