Healthy Buildings Mold

Why ‘Nobody’ Believes the Mold Sufferer

If there were a battle hymn of the mold sufferer, it would be titled: “Why Does Nobody Believe Me?”

If you’ve ever met someone who has suffered from “the mold experience,” you’ve probably met someone who knows intimately how it feels to be doubted.

The stories are boundless and endless — readily available if you search: Thousands each year. Family aren’t convinced. Friends suspect exaggeration. Doctors assume it’s all in the mind.

On one hand, suspicion: This situation simply cannot be as bad as ‘they’ make it out to be.

On the other, desperation and resentment: Why won’t they believe me?

If there were a battle hymn of the mold sufferer, it would be titled: “Why Does Nobody Believe Me?”

And it’s a great question! Why do so few mold sufferers find the support they need? Why does “nobody believe them” in their struggle?

I think I’ve identified a few universal reasons; let’s dive in.

Mold can be invisible

Mold usually is invisible to the naked eye.

And by invisible, I mean “not visible.”

On one hand, mold hides in places we can’t see: Inside walls. Behind cabinets. Underneath window sills. In crawl spaces. Under flooring. Inside HVAC systems and washing machines. Behind shower tiles.

Our houses are not made of glass! We can’t directly see or observe most of its surfaces. Studs inside a wall are completely hidden. As is the sheathing behind brick. Or the foundation, or bottom plate, or mud sill, or floor joists.

In fact, almost the entire bones of a house are “not visible” to the inhabitant.

And if moisture is present — and if lumber products were used in construction — mold could be growing anywhere, unbeknownst to anyone.

But that’s just on one hand: yes, the places mold grows are hidden.

On the other hand, the components of mold’s biology that actually cause problems for people’s health are literally invisible — they are microscopic.

What are these components? Spores, for one — which can float and suspend in the air, and stick to walls — are invisible. They can be breathed into the lungs and swallowed into the stomach and intestines. They can begin to grow inside the human body, causing an ongoing immune reaction.

But even more than that, each type of mold produces varying amounts of “mycotoxins” — potentially extremely toxic compounds that the body can become sensitized to over time (especially after long-term exposure and in children and those with additional health factors or traumas).

Scientists aren’t sure why molds release mycotoxins, but many suggest it is a defense mechanism against animals that might disturb it. Essentially, a biological signal from mold to animals to “get out.”

If you’ve ever explored a dark, musty forest or cave — or basement — and felt a harrowing feeling that you aren’t welcome, it could be related, in part, to fungal mycotoxins building up in a damp space.

So we see two aspects of mold’s ‘invisibility’: On one hand, it tends to grow in places we simply cannot see, and on the other, it’s primary components (spores and VOCs) are invisible to the naked eye.

Anytime humans start talking about “invisible” things — whether it be pollution or religion or political theory (or conspiracy theory), we can be sure that the conversation is inclined toward controversy.

Humans don’t like uncertainty; in fact we often will do anything to avoid it. Yet with the topic of mold, certainty is not readily available: Testing (ERMI) is extremely prone to false negatives and misinterpretations of results by the ill-informed, and medical practitioners are either completely untrained in the topic, or, on the leading edge of experimental (and entirely unproven) treatment.

Mold’s literal “invisibility” makes it not just a difficult topic to treat, it’s a difficult topic to discuss.

And thus, “nobody believes the mold sufferer.”

Mold can hack your emotions

If you’ve ever been in relationship to a mold sufferer, you may have seen their emotions.

There’s a reason for this: Emotions can become incredibly dysregulated after sensitization to mold.

On one hand, a person who once was calm and well-collected can find themselves struggling to keep it together.

By contrast, someone who was always passionate and expressive may find themselves struggling to limit powerful releases of emotions.

In addition, mold sensitivity can absolutely destroy both one’s digestion and sleep. Cognitive function peters out — the brain does not function without sleep, or with poor gut health.

Being unable to sleep is tangible torture — in fact, it’s historically been used to torture prisoners of war and is condemned by the United Nations as a violation of the Geneva Convention.

“The U.N. Committee has detailed a list of acts that constitute torture, such as prolonged sleep deprivation and violent shaking.”

If there’s any sort of relationship or family strife, these situations can quickly become entirely toxic, and very harmful, to everyone involved.

Marriages and families are commonly torn apart in the presence of mold. It takes incredible skill, wisdom, and patience — on everyone’s part — for relationships to survive in this situation. One person can’t do it alone.

Mold affects everyone differently

Speaking of family and relationship dynamics, one reason mold sufferers are doubted is because not everyone is affected the same way by mold.

Children are often much more susceptible to mold allergies and mold illness — perhaps because 1) their immune systems are more robust, and/or 2) they’ve grown up in a more toxic world than previous generations. Or 3), their bodies are smaller.

Trauma sufferers seem to be much more susceptible, toopotentially because trauma so severely disrupts gut function, which is the seat of digestion and immunity.

Folks with chronic insomnia appear to be more at risk of developing hypersensitivies, as do those who have eaten restrictive diets that can result in nutrient deficiencies.

There is also, undeniably, a genetic component in many: the MTHFR gene variation (along with other polymorphisms) can cause the body to detoxify toxins at a slower rate than the typical person. This leads to a more sluggish metabolism and immune function, and can prime the body for sensitization to environmental irritants and toxins. Remember, no two people have the same genes — and that includes parents and children.

There’s also the fact that no two people have the same life history. Siblings grew up in different bedrooms. Spouses in different neighborhoods or cities. Children grow up in different houses than parents — even if the same house, decades older. Technologies were different across generations. The vast complexity between any two people’s life experiences and exposure levels — combined with age, trauma, and genetics.

Consider also one partner working from home, while the other works outside the house. It’s common for the partner working at home to fall ill, while the partner who spends much less time at home to be more healthy.

I even had a roommate, for many years, who lived on the “new addition” side of the house. While he had some ongoing allergy issues, he never developed the outright illness I did, living on the 90-year-old side. He travelled for work (music) about 50% of the time, and left for work on days when home.

By contrast, I found myself spending 24/7 in the house, falling more and more ill with each passing day. He was in his 40s, I was in my young 20s. It made no sense to me then, but it does now.

I was younger, I had known trauma, had chronic insomnia since a teenager, I was trying restrictive diets to have more energy, and grew up in a moldy house. I have not had genetic testing, but a MTHFR gene wouldn’t surprise me in the least.

I spent a decade trying to understand what was wrong with me — while in the house.

When I left the house, I got better. Much better.

Like I said, it made no sense to me then, but it does now.

No two people have the same history: of exposure to mold, of insomnia, of diets, of trauma, or gut microbiomes, or with their genes.

And that’s a huge reason why “nobody believes the mold sufferer.”

Mold sensitivity often leads to other sensitivities.

Here’s, perhaps, the final — and most confounding — aspect of all.

Mold hypersensitivity is a biological response to a chemical irritant.

But it doesn’t isolate itself — neatly and cleanly — to only occur when exposed to mold.

No, many — if not most — mold sufferers — become sensitized to other things, too. Non-mold irritants.

An especially common one is fragrances and other chemicals. Household cleaners, perfumes and colognes.

This is known as MCS — Multiple Chemical Sensitivity.

I’ve got a great article written on this topic (here), but if the situation continues unabated, sensitization can progress to the point that even the slightest chemical can become intolerable — even chemicals the nose cannot detect.

This hypersensitivity is not a superpower — even though it can impart a valuable skill to be able to discern how healthy an environment is.

The sensitivity can even expand beyond the scope of chemicals and into frequencies of light: sunlight sometimes becomes intolerable, heat can become intolerable — and, yes, even radiofrequency (the frequency of light our wireless devices use).

Here’s the problem: The more threats appear in the environment, the easier it becomes for others to be dismissive.

“This is an exaggeration.”

“There’s just no way that affects you.”

“It’s impossible that such a small exposure to this chemical made you feel that poorly.”

As much as I loved Breaking Bad & Better Call Saul, the latter did a disservice to real people — including myself (a serious-minded, son of a medical doctor, economics/finance major, & General Contractor & homebuilder) — for the real people who suffer daily from what might-appear-to-be-invisible environmental sensitivities.

And for the record, scientific journals are chock full of evidence demonstrating hypersensitivity to nearly any and all environmental irritants. Just because someone says “there’s no evidence” — or a TV show paints a dismissive picture — simply does not end the discussion. The tens of thousands suffering and the real, tangible research clearly say otherwise.

Briefly, my version of this story

I know this story personally. I never felt allergic to anything when younger. I didn’t have allergies. Never felt sensitive.

But upon moving to a very, very moldy house in Nashville, I had a great 8-9 months playing music, making connections. Was lined up to join my dream band in town (!), and had other opportunities to play with award-winning bluegrass musicians.

Then all hell broke lose. I had always been a light sleeper, but it got unmanageably bad. I frequently couldn’t fall asleep until 4am. My digestion tanked. My brain became flighty, thoughts were difficult to produce, or control. I developed fatigue, and even my hands/forearms began to hurt and fatigue tremendously when I played music. I had to pull back from playing music altogether within a full two years of moving to Nashville.

And I spent the next 7 years trying to figure out what the problem was.

All the pieces — every component — I tackled. I dove through diets. Wrestled my sleep into submission. Conquered gut health and nutrient balancing. Overcame hypothyroidism (resulting from mold exposure).

I realized I was extremely, extremely sensitive to other irritants, too. Undeniably so.

I left no stone unturned — except for mold.

In fact — and this is remarkable — my landlord had flooring replaced about 5 years into my stay there. On the subfloor, there was black mold, visible, in many places all around the house.

I ignored it. It overwhelmed my brain. Even when the invisible became visible, I did the most normal human thing: I turned away from the uncomfortable, the unknown.

It took me three more years — and an incredible then-girlfriend (now-wife) — to open my eyes. Yes, mold was a problem for me.

I moved out. Got rid of all my stuff. Yes, mold travels with belongings.

I stopped feeling awful. I slowly got better. My relationships improved. Sleep resurrected. I began to believe in my future again.

My brain came back — fully. My emotions are a bedrock now, rather than a millstone around my neck.

You can be a light

Have you met someone suffering from mold illness? How has it affected your relationship with them?

I encourage you — from the depths of my heart — you can be a light for that person. You might be the only one they have.

I’m not asking you to do their work for them. Not asking you to become an enabler to negative thoughts or actions or behaviors. They still need to live their journey, make decisions for themselves, and find their way forward. But those decisions might be overwhelming to them, each step made with 5 extra G’s of gravity.

Can you be a sounding board? Can you help them talk through their options? Can you brainstorm solutions in a positive way?

Can you validate their pain?

Can you speak some life into them? Inject hope into their struggle. A vision for improvement, for healing, for reconciliation, for a new life.

The risk is sometimes high: If these situations are not rectified in time, the mold sufferer can become nearly homeless. I’ve seen successful business people literally lose it all — everything they own, their career. I spoke a few times with a NASA engineer whom this happened to, and they weren’t out of it yet, virtually homeless with no income. The belief in their future was gone.

And this can be quite scary for us to encounter: When people become homeless in their spirit, they don’t resemble the person they used to be — the person they truly are. They may be desperate for solutions, and even hyperfocused on diets, treatments, or supplement ideas that won’t ultimately solve the problem. Getting mostly free from mold is the primary thing that helps — and they can explore additional solutions downstream.

So, perhaps, that’s why very few people “believe the mold sufferer.”

But you can be a believer, both believing their story, and believing in the person — and their bright future.

And that’s what’s needed as much as anything else.

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