What not to say to someone living with chronic illness — and why

Pulmonary hypertension (PH) is a complicated disease, which makes it especially fascinating how many of its problems can apparently be solved by someone who learned about it 45 seconds ago.

Those of us living with PH spend an extraordinary amount of time managing our own bodies. We plan, pace, rest, cancel, and rearrange, only for the outcome of our days to feel like a coin toss: Conquer or fail, crash or recover. We can make every sensible choice available to us, and sometimes our bodies respond with what can only be described as “That’s adorable.”

That unpredictability invites an impressive amount of unsolicited troubleshooting.

“Well, if you rest for a day or two beforehand, you’ll have the energy.” Ah, yes. Rest.

If two days of rest reliably guaranteed enough energy for the third, PH specialists everywhere would be thrilled. Patients could block off a couple of days, recharge, and emerge on the third day ready for weddings, appointments, grocery shopping, and every other plan PH has interrupted for years.

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Then there is the inevitable, “But you did it yesterday.” Yes. Yesterday was a beautiful success story. Unfortunately, it has concluded, and no legally binding contract requires today’s body to perform at the same level. The superpowers have expired.

Doing something once does not permanently unlock the activity. This is not a video game. We did not beat the level, collect the badge, or gain lifetime access to “Showering without Consequences.”

Next, the old faithful: “But you don’t look sick.” That is the “invisible” part of invisible illness doing a spectacular job.

PH is happening inside the body, where the heart and pulmonary blood vessels generally have the decency not to make a dramatic public appearance. Looking well isn’t a cardiopulmonary assessment, and lipstick hasn’t cured anything I have.

There is also a simple reason people may see someone with PH looking well: We don’t like to leave the house when we are sick and looking ill. Sometimes, when I feel well, I’ll take extra time and put in some real effort to look nice because it feels good to look in the mirror and recognize myself, not my illness.

The nature of invisible illness

What others don’t see is the planning beforehand, the energy it takes to shower and get dressed, the strategic parking decision, the shortened visit, or the recovery afterward. They see the good parts.

Most of us do not advertise the hard parts. We don’t issue press releases every time we need to lie down, cancel plans, or quietly rearrange the day around symptoms. So, yes, we may look fine. That is not evidence that we are fine. It is proof that invisible illness remains remarkably committed to the bit.

Let’s also tread carefully around “You should push yourself more.” We know how to push. We have pushed through fatigue, breathlessness, dizziness, pain, and horrible side effects from our medications because life still needs to happen. We show up for people we love, work, raise families, travel, advocate, and manage lives inside bodies that do not always cooperate.

Often, nobody notices the effort because we are trying to make life feel as normal as possible. Sometimes the harder lesson is learning when not to push.

And let’s not forget the classic: “At least you can still …” Let me stop you right there. A person can appreciate everything they still have while grieving what illness has taken. Those emotions are not mutually exclusive. Gratitude doesn’t cancel grief, and grief doesn’t make someone ungrateful.

Most of the time, people’s comments come from a good place. People care, want to help, and sometimes reach for a solution because they do not know what else to say.

Support does not always need a solution. “I’m exhausted” doesn’t require an investigation into bedtime habits. “I can’t go” doesn’t need to become a strategy session on how to work out our logistics. And “I did it yesterday but can’t today” may be the entire explanation.

So what does help?

Believe us when we tell you what our bodies can do. Understand that canceling plans may disappoint us, too. Ask what would help instead of assuming you already know.

And operate under the very reasonable assumption that somewhere during the years we have spent managing a serious chronic illness, the possibility of resting has occurred to us.

For more, follow me on Facebook or Instagram, or check out more of my columns, The PHlip-side.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.