To Be Sick When the World Is on Fire: Living with Dysphagia in an Age of Uncertainty

Over the past few months, we've all read articles and seen interviews discussing the state of our world. There is a shift that many of us can feel, yet struggle to comprehend. It's like a slow erosion, until one day we realize that something fundamental has changed.

What's really changing is trust and the notion that what has always worked will continue to work. As I write this, I feel a familiar ache. On a smaller scale.

When you lose trust in a partner, a relative, or a close friend, it is as emotionally painful as it is radical. You suddenly understand that your sense of stability was based on something you thought would last forever. When that support disappears, you're forced to face an uncomfortable truth: you have to rely on yourself.

Health Shopping for a Chronic Illness

The same is true when dealing with illness, especially chronic and under-discussed conditions such as dysphagia.

As a child, I was taught that doctors had privileged knowledge and deserved unquestioning trust. They were authority figures in the purest sense. You listened, complied, and believed.

Then the internet arrived.

Medical knowledge, once locked behind years of training, became partially accessible to everyone. Not all of it was accurate, but enough of it was real to crack the pedestal. Doctors slowly shifted from being infallible figures to consultants. Patients became clients. Healthcare became something you navigated, compared, and, most importantly, questioned.

This shift was especially significant for people living with dysphagia. Swallowing disorders are often minimized, or treated as secondary symptoms rather than life-altering conditions. Patients quickly learned that they had to advocate for themselves, or risk being misunderstood or, worse, overlooked.

And then came artificial intelligence.

Suddenly, we all had access to a tool that could summarize studies, explain mechanisms, and suggest hypotheses in plain language. Whether we like it or not, another threshold was crossed. We are no longer passive recipients of medical services. We are participants and interpreters. AI has leveled the playing field.

Trust as a Currency

The allure of social media largely hinges on trust. Every post and video by self-proclaimed experts asks the same question: "Will you trust me?"

While several posts are political, medical posts are becoming more prevalent. This is particularly true for dysphagia, where online advice ranges from genuinely helpful coping strategies to dangerous misinformation.

As trust in healthcare systems erodes, people respond in various ways. Some withdraw completely. They stop seeking care, asking questions, or believing anything. Others do the opposite. They frantically search for alternatives, jumping from solution to solution in the hope that something will finally answer their questions.

What often gets overlooked is a third option: self-reliance.

A reconnection with our own ability to observe our health, learn, and make informed decisions.

Remembering Self-Reliance

I come from a long line of farmers. People who survived by knowing how to feed themselves, how to care for their bodies, and how to adapt when conditions changed. They didn’t have access to modern medicine, but they had knowledge, observation skills, and resilience.

For them, self-reliance was not a lifestyle choice. It was a matter of survival.

Over time, we were encouraged to replace self-reliance with trust. Trust that food would always be available. Trust that healthcare would always be there when needed. Trust that systems larger than us would keep going.

For those living with dysphagia, trust is a must. It's about managing texture, safety, preparation, and being constantly vigilant. We need to trust that the system, the caregivers, and the health professionals around us will not let us down.

Biologists know what happens when self-reliance disappears. Feed wild animals long enough and they stop foraging. Within a single generation, behavior changes. Dependency forms. You stop, they die.

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Many of us are panicking today because we sense, consciously or not, that food may not always be guaranteed. Supply chains can falter. Medications may become scarce, and appointments  delayed. And suddenly we realize how little experience we have relying on ourselves.

A Renewed Self-Reliance

I know this sounds frightening. We are waking up in a world that no longer feels predictable.

There are no guarantees that the medications, supplements, or medical nutrition products we rely on today will be available tomorrow. The COVID pandemic made that painfully clear. Disruptions to adequate food, equipment, or access to health professionals are not minor inconveniences for people with dysphagia or a chronic illness. They are existential.

I am a "Plan B" kind of person. For anything I depend on, I try to find an alternative. This doesn't mean I reject the primary solution. It means not putting all my eggs in one basket when it comes to my well-being.

Unlike my farming ancestors, I live in an era of abundant information. Books, studies, support groups, forums, patient testimonies, scientific news. This information ecosystem is our new environment. Learning how to navigate it wisely is now part of managing our health.

I'm not suggesting that we stop relying on others. Humans are social creatures. We survive together or not at all. But limiting ourselves to one authority, one treatment, one diet, or one narrative is risky. Dysphagia, like many conditions, is highly individual and often evolves over time.

The Good, the Bad, and the Ugly

When societies move from self-reliance, to trust, and then back to self-reliance, something crucial gets lost along the way: survival instincts.

That loss creates fertile ground for scams and abuse.

If I had to forage for my food today, I would probably poison myself. Not because I am careless, but because I lack the necessary knowledge. The same applies to health information. When trust collapses faster than skills can be relearned, people become vulnerable.

Science remains essential. It is how civilizations progress. Yes, it is entangled with profit. Yes, it prioritizes conditions that affect large populations. But it also saves countless lives.

After being diagnosed with a rare condition that causes dysphagia, I quickly learned that relying on one medical opinion was not enough. I asked questions. I searched for alternatives. I listened closely to my body. I compared information. But, most of all, I learned to embrace trial and error.

Trusting Yourself Again

In uncertain times, the most sustainable approach to health is neither blind trust nor total rejection. It's discernment and awareness.

Trust yourself enough to ask questions and research dysphagia and swallowing disorders from credible sources. Trust yourself to consider alternatives and adaptations. Be wary of miracles and shortcuts. Treat AI as a tool, not an oracle. Verify. Cross-check. Reflect.

No one knows your body better than you do. No one else experiences your swallowing difficulties, fatigue, fears about eating, and quiet victories.

When the world feels like it's on fire, reclaiming self-reliance is one of the most stabilizing and dependable things you can do to live a decent, comfortable life.

Hang in there,

Joanne

To purchase or learn more about my book Give Me a Solid, click here.