Acknowledging Mold PTSD and How It Can Stand in the Way of Your Recovery

Mold PTSD is rearing its ugly head again. I am writing this post feeling very raw and very scared. I am sitting at my kitchen table with what feels like the weight of the world on my shoulders. You see, this morning my husband was outside skimming leaves from the pool when he noticed a significant amount of water coming from the condensate line that flows from the HVAC system and dehumidifiers in the attic to the outside. He alerted me, and I ran upstairs to see what was going on. Sure enough, the dehumidifier’s pan was full of water, wasn’t draining properly, and was overflowing onto the attic floor and into the attic insulation beneath it. Water marks were even beginning to spread on the ceiling of the guest room located under the dehumidifier.

Springing into action, I quickly unplugged the dehumidifier and grabbed towels and our wet/dry shop vac to suck the water from the pan to stop the overflow and damage. We then cut a hole in the guest room ceiling to remove all of the wet drywall and insulation and to direct fans into the ceiling cavity to dry out the wood framing and beams. We have done all of the right things to contain and to mitigate the damage and moisture intrusion. But, now comes the hard part: Now we have to play the waiting game of whether or not we have done enough to prevent mold growth. It is this waiting game and the unknown ahead that messes with my mind, and, in turn, messes with my body. I can feel the anxiety building inside of me. I even think I can feel some mold symptoms coming back. Is it from the drywall dust? Was the leak going on long enough to already produce mold growth? Am I getting sick again?

I want to work through this, to use the emotional tools I have learned to calm my anxiety and fear, but instead, I start to fantasize about just running away or someone coming in and saving me. Neither is a rational thought, but both sound wonderful to me right now. If I ran away, or if someone could handle all of this for me, I wouldn’t have to worry anymore. My mold PTSD is striking again, and I am giving in without a fight.

You Cannot Control Everything

Logically, I realize that accidents and leaks are out of my control. But, given the careful and controlled life I have been living to keep my family safe and healthy, today’s disaster is showing me that I am still very much dealing with a form of PTSD that came from our mold nightmare. I know this, because instead of flying into problem-solving mode, I my immediate emotions are anger and fear. Questions, like how could this happen? and why me? took over my thinking. Panic and fear of sickness overwhelmed me. I was angry with the HVAC company who stalled the unit, and I was angry that we never seem to catch a break when it comes to home disasters and mold—it’s been one thing after another. I was ready to punch someone and to cry at the same time. I was losing control over the safety of our home again, and I was spiraling into feelings of helplessness.

Regaining Perspective

I am not proud of my reaction. For one, I started this blog to give hope and help to people navigating through issues just like this, but here I am feeling hopeless and defeated.  Even though I know we can solve this issue, and have the tools and resources to properly do so, I still feel paralyzed for some reason. So, what is REALLY going on with me? And, what can I do to help get myself out of this downward spiral before the fears of getting sick again actually become a self-fulfilling prophecy?

Emotional Trauma in Relation to Mold/Environmental Illness

I think I need to start with acknowledging that my panic and fear are not unfounded. When you have been through the debilitating experience of losing your health, your mental capacity, and your finances to something like mold, you do have a significant life trauma under your belt. Please hear that. I don’t care what anyone says—your experience was traumatic for you and thus your current fears and anxieties are justified. But, unlike a one-time, emotionally or physically jarring event that occurred in the past, mold-triggered illness falls more into the realm of what psychologists are now labelling as chronic illness trauma. This may seem like I am stretching here, but scholars have long known that people who live with chronic illness are at a greater risk of experiencing PTSD-like symptoms, even though until recently, there has been no clinical diagnosis for it.  In fact, anyone experiencing ongoing illness or disease is enduring an ongoing threat to safety.  Researchers have thus proposed a model of PTSD that accounts for this difference entitled the Enduring Somatic Threat (“EST”) model of PTSD (Donald Edmundson, PhD).

To better explain the EST model of PTSD as it relates to mold sufferers, I like to think of it this way: Mold illness can be a long and confusing path fraught with a multitude of physical symptoms and suffering. This path usually contains the following roadblocks and traumas:

• Debilitating symptoms that affect all systems in the body, including emotions and cognition, making everyday living and routine tasks extremely difficult and exhausting;
• No clear treatment path or protocols, since each patient presents differently and needs different interventions to heal—even some of the best and brightest doctors in the mold space treat patients very differently with different modalities and practices;
• Psychological and relational traumas, like losing your home and your belongings, and not always be taken seriously by doctors, health practitioners, friends, and family members—many a mold story ends in divorce or separation, since not everyone in the home is affected in the same way;
• The loss of self to a “new normal” of sickness and fatigue that sometimes seems to have no end;
• Feelings that nowhere is safe anymore—the trigger, mold, is everywhere, and will have to be dealt with forever, right?
• The stigma attached to mold illness, where the sufferer is a “crazy mold person” and can become a social outcast of sorts, because not everyone understands or gives credence to the illness.

I know this list is not complete and that I probably missed something, but the point is that dealing with mold illness can be a slippery slope and obviously traumatizing. But, why does it matter to acknowledge and deal with this psychological and emotional piece? If you are able to handle it, shouldn’t you just move on?

Why the Link between Chronic Illness and Trauma Matters

Not everyone will develop illness-induced PTSD—it’s estimated that PTSD-symptoms from chronic illness only affects 12-25% of people (Edmondson, 2014).  But, given that we know the health consequences of PTSD include diminished mental and physical quality of life, like neurobiological alterations – including higher inflammation levels (Koenen & Galea, 2015), less adherence to medical treatment, and social/physical isolation, it is my opinion, that this part of recovery is essential for healing.  I am not a doctor, so I can only speak from personal experience, but I am currently seeing what I can only classify as mold PTSD negatively impact my quality of life. I clearly am still very stuck and very fearful. I have also seen it negatively impact the lives of others. For example, I have spoken with many very sick people who refuse to even test their current homes for mold, because they just do not want to know. They want to avoid addressing the topic completely—dealing with mold again is just too loaded for them. I have met other mold sufferers, and I fall into this category as well sometimes, who stop therapies or medications, even those that are helpful, because they are just plain tired of dealing with all that it takes to get better. None of these avoidance tactics do anything for our health, in fact, they can actually hurt recovery, but sometimes the path of least resistance just feels safer for some reason. Another layer of mold PTSD can be despondence, or the feeling that this happened to you, because you somehow deserve it and are a bad person. For example, there are many mold patients who frustrate doctors, friends, and family, because they leave one moldy living place for another, never truly believing that they can and deserve to be well. For myself, during long stints of feeling really great, I feel overwhelming guilt when I speak with someone who is still suffering and trying to get their head above water.

Healing from Mold PTSD

I definitely do not have all of the answers, I wish I did. What I can offer are resources and my insights as to what things have helped me previously and what things I am currently doing to continue to push me forwards with healing psychologically. I live in the mindset that healing is possible, and that addressing this nervous system/emotional trauma piece of recovery is perhaps the most important piece of healing. Above anything else, what I have learned is that you do not have to do this in a vacuum and that there are many helpful resources out there. I think Dr. Neil Nathan, one of the front-line docs who treats many environmental- and mold-illness patients, said it best, when he stated: “The majority of our patients are set up for inflammation of the limbic system which is adding to their issues . . . In my experience, at least half of my patients have a limbic component. More and earlier on, I am going to address it with some form of treatment.” (You can read the rest of this interview HERE.)

What follows is a list of healing modalities and resources that I have found personally helpful for dealing with my PTSD symptoms:

• Exercise – I realize many of you who read this blog are very sick, and that exercise does not even sound conceivable to you right now. Please here me out, though. The scientific evidence continues to stack up that exercise may help prevent and treat depression. There have been numerous randomized control trials that show exercise plays an important role in mitigating depressive symptoms, facilitating recovery from depressive disorders, and preventing relapse. A wonderful podcast and resource that explores the scientifically proven benefits of exercise on mood and the psychological symptoms of depression is by Dr. Rhonda Patrick. It can be found HERE. I continue to exercise in some capacity every day. It is essential to my recovery and well-being.

• Brain mapping/Neurofeedback – I am new to brain mapping and have only participated in 2 therapeutic sessions since my initial mapping session so far. In a nutshell, you can find out if your brain is using a trauma pattern by having it evaluated using Quantitative Electroencephalogram (qEEG). A qEEG “Brain Map” can show you if your brain is using a trauma pattern and if so, where in your brain is it happening and to what degree. (Note: A 2012 study showed that qEEG Brain Mapping is an effective way to identify and isolate the brain changes that occur in PTSD. The changes typically involve the frontal lobe and temporal lobe brain functioning and can be easily seen on a brain map.) Once your brain is “mapped,” you then can participate in a series of individualized treatments that use Neurofeedback Therapy to retrain your brain to create new, better patterns to alleviate your suffering. It is relatively simple, passive therapy, but has already led to significant improvements in my emotional life. (Note: Brain mapping or biofeedback can also be tremendously helpful for healing some of the actual trauma that the brain can experience from the mold toxins. It is well documented that people who have endured prolonged mold exposures often have evidence of brain swelling and/or injury. )

• Eye Movement Desensitization and Reprocessing (EMDR) – This is the first treatment that I tried to address my PTSD symptoms. I found it helpful, but had a hard time focusing my sessions on the most impactful trauma, since my experience was not incident or situation, but drawn out over time. Since EDMR works by having you call to mind a trauma or event, and hold those thoughts and feelings, while also paying attention to a back-and-forth movement or sound (like your provider’s moving finger, a flashing light, or a tone that beeps in one ear at a time) until your distress goes down, I don’t think I was able to work through everything I needed to for significant and lasting relief. I think people who find traditional psychotherapy or talk therapy helpful will find the most benefit from this modality. A good resource to learn more about EDMR for the treatment of PTSD can be found HERE.

• Tapping – My impression has been that tapping is to psychology as acupuncture is to medicine. In other words, it works and is proven to work, but we don’t know exactly how or why. It is an emotional release therapy that can be performed by a pracitioner or on yourself by tapping with fingers on specific acupuncture points. Doing so successfully releases the emotional pain associated with traumatic memories, thoughts, or events. Tapping has been proven to work faster, and with longer-lasting results,  and more comprehensively than most traditional treatment methods. Gary Craig has an excellent online FREE tapping tutorial that shows you exactly how to perform the therapy on yourself. It is easy to follow and easy to implement. My son has found it soothing and helpful. He is 12-years old for reference. I have seen children as young as 8 find it beneficial as a self-therapy, and an adult can learn and perform the technique on a younger child. It is a way to sort of self-soothe and to calm yourself when faced with situations that ignite PTSD-like reactions. The drawback is that I sometimes am not wise enough to implement tapping during times of intense stress. I guess, I am still learning too.

• Dynamic Neural Retraining (DNRS) – I have written about Annie Hooper’s DNRS brain retraining system in the past, but this post would not be complete without mention of it. I have read and re-read her book Wired for Healing, and found it very insightful and helpful, but have not taken her DVD course or intensive in-person courses. Both require an extensive time commitment and adherence to a set list of exercises each day designed to rewire the brain to re-establish patterns that allow the body to heal, rather than remain reactive. More than for PTSD symptoms, this form of brain retraining address the nervous system damage that occurs when a person becomes “stuck” in a cycle of inflammation where the body senses danger, even when the threat has passed. I have heard and seen testimonials from people who were so sensitized to chemicals and to medications that they were even reacting to water. One woman I know was living in a tent in her backyard, unable to find a suitable living environment before taking the DNRS course. Now, she is back with her family and thriving, able to live inside her previous home and able to respond positively to both mold and Lyme treatment. I honestly wouldn’t have believed that such a profound change could’ve occurred just from nervous system retraining if I had not seen it with my own eyes. More recently,    many holistic psychologists have been writing about the benefits of using DNRS specifically for treating PTSD. It does not eliminate the need for medical treatment for the toxicity or mold illness piece of what they are going through, but it does seem to ready a person’s body to receive and accept treatment and outside stimuli much better.

Do you like more personal posts like this one? Prefer something else? Please comment below or write to me at catherine@moldfreeliving.com. I want to bring you content and information that you find helpful and encouraging. I cannot do that without your feedback.