Navigating the Good, Bad, and Sometimes Ugly World of Online Mold Groups
by Matthew Kelly, Detoxification Specialist, Functional Health Practitioner
The world seems to STOP the moment the awareness sets in that toxic mold is fueling our illness. Whether from a positive mold test or finding water damage in our home, a lump lodges in our throat and our heart pounds in our ears as the reality sinks in — IT’S TOXIC MOLD! Now what?!!!
Toxic mold illness can be emotionally, physically, and financially devastating. Wrestling with the layers of how to detox the body of mycotoxins, how to get rid of mold colonization in the gut, how to find the mold in the home and properly remediate it, not to mention how deal with the mold and toxins that have now spread throughout the home, all while potentially losing a job or dealing with a child who has become unable to attend school can become very messy, very fast. So where do we turn for advice and resources? Social media, of course!
Social media mold groups can be a fantastic resource and a place to find community during a mold recovery journey; however, these same groups can also create a lot of undue stress and frustration. Thus, being choosy about the groups you spend time in can help you learn and navigate through the confusion, while avoiding common mold pitfalls and fearmongering.
5 Benefits of Mold Groups
There are some distinct strengths to connecting with people in online mold groups. Here are some benefits to joining a Facebook group while you are on your mold journey and looking for guidance and advice:
1. Support from people who understand.
Toxic mold illness is an extremely isolating and stressful experience. It’s not widely recognized by mainstream doctors, so getting an accurate diagnosis is difficult. And most people are oblivious to the effects of toxic mold. Finding others who are experiencing similar struggles — knowing we aren’t alone! — can be extremely comforting. There is validation in knowing it isn’t just us! Other families are also facing the same challenges and dealing with the same stressors as we are.
2. Learn how mold affects the body.
Mold can cause allergic, toxic, and neurological symptoms in the body. Since most symptoms are considered “generic” and are hard to measure using regular labs, most doctors (even specialists!) wave off symptoms as being psychosomatic or not a sign of actual illness. Members of mold groups share the signs and symptoms of mold illness that are showing up in themselves in in their families, which can help us “connect the dots” to better understand what’s going on inside our own body.
3. Learn where mold grows in the home.
We can learn a lot by others’ experiences! When we read a story and see photos of a blanket of Stachybotrys found when a living room wall was opened up to repair past water damage, we look at our own walls differently. In this case, others’ experiences are pure gold, teaching us what and where to look when assessing our own home for water damage and potential mold growth. Others may also have insight into your situation, because they had something similar occur in their home.
4. Learn about supplements and therapies that have helped others.
Since every physical body is unique, not everyone responds the same way to the same supplements and therapies. Reading others’ stories about which supplements and protocols helped — and which ones made them feel worse — can help us make informed choices about our own treatment options.
5. Learn from others’ mistakes.
Mistakes are inevitable, because no two situations are identical, and the people involved have different training and experience. It’s inevitable that some things will be missed, and other things messed up. By following others’ experiences and paying heed to their mistakes, we can take care not to repeat them in our own situation.
Five Drawbacks of Mold Groups
Now that we have highlighted the benefits, we must also recognize the drawbacks. It is important to be aware of some of the following issues when joining a mold group:
1. We can become overwhelmed by too much information.
Toxic mold groups are like drinking from a fire hose — so many ongoing angst-filled stories, symptoms, questions, recommendations, protocols, products, warnings — and it all dumps on us at once. Becoming overwhelmed by the sheer volume of data present, and its emotional impact (due to its negative tone) is pretty much a sure bet.
2. Conflicting advice creates confusion.
Because everybody is different, different approaches and therapies have different effects. For example, some people are helped by chlorella as a binder, while others react poorly to it. This creates the illusion that the advice is “conflicting” because what works for one person doesn’t work for another. There can also be both good and bad advice shared on posts creating conflict and an inability to discern what advice to follow. For example, someone might say to just spray bleach on mold to fix it (wrong!), while someone else may explain how moldy materials need to removed to fix the problem (correct!).
3. It becomes depressing when there’s no clear path.
Since everyone’s home, construction practices, condensation zones, and water damage history is different, that means that our paths through assessment, removal, reconstruction, and remediation will also be different. Even “best practices” must be adapted to the situation, and everyone (from mold groups to professionals) has differing opinions on how to best address the situation. It becomes depressing when we’re faced with spending thousands of dollars and we still aren’t sure that we’re doing it right. Then, the fact that the path is not clear creates inaction and sometimes depression in the feeling that there is not a path at all.
4. Well-intended people giving bad advice.
Sadly, mold groups are full of people who’ve been harmed by toxic mold. Many replies reflect stories of trauma and being wronged, where they tell people to do what they did (or are still doing) — which didn’t properly address the situation, and isn’t creating health. Always “consider the source.” If someone is still entrenched in sickness and doesn’t have a clear path for reclaiming their health, they might not be the best person to take mold recovery advice from.
5. What works well for one person may not work well for you.
Toxic mold groups are led by admins, are full of thousands of members, and are citing the work of dozens of practitioners who all have differing experiences of successful approaches and protocols. We do our best to select the options that make the most sense for us. Out of desperation we may even try protocols that are recommended to us but go against our gut intuition. It’s inevitable that we will try things that worked for others but don’t work well for us, and it’s frustrating to see others succeed when we don’t get the same results.
A New Type of Mold Group
For these reasons, good and bad, I decided to create a new Facebook mold group. I wanted to keep all the benefits of mold support groups, but to create a group where the confusion, bad advice and conflict was removed. I wanted to give people factual advice that empowers them to keep moving forward with a realistic plan of healing, for both home and body.
A Little About Me
I’ve spent years studying mold toxicity and its awful effects on the body. My own family was touched by mold, and it created complete hell for some of our children. My wife and I were left with sick children and a medical system that couldn’t find a cause; a medical system that said it was in their heads; doctors who thought mold exposure can only cause allergies. The medical system left us hopeless. I eventually found how to test for mold and mycotoxins and was able to start our family on the path to healing.
Toxic Mold Answers
Mold can be completely debilitating–that’s why anyone giving direction needs to be a mold expert. While other group admins have the best of intentions, they are not practitioners, and some are offering really poor advice and are doing their members a great disservice. I made the group called “Toxic Mold Answers” to offer real guidance. (I’ve uploaded over 100 video answers to common mold questions). I take my years of experience and passion for helping those with mold sickness and share definitive answers for people’s questions; answers people are looking for, and need.
My “Toxic Mold Answers” group cuts out the bad advice and confusion. I take personal responsibility for making sure that what’s shared is true and helpful. I have an amazing moderator, Karin, who also makes sure people have factual data in order keep making the next best steps in their mold journey. (The link to my group is: https://www.facebook.com/groups/toxicmoldanswers. You can also use this shortcut: www.ToxicMoldAnswers.com.)
Toxic mold groups can be a phenomenal resource in our recovery journey when we choose high-quality groups that encourage safe, informed action steps and a healthy mindset. A mold-safe home is the foundation of physical, emotional, and financial recovery, so be choosy about the kinds of groups you allow in your proverbial space! They can have a profound impact on your recovery — or lack thereof.