Mold and marriage do not tend to be good bedfellows. Experience, online forums, and psychological studies show that relational decline, conflict, and marital separation are unfortunately harsh realities in families plagued by environmental and mold illness. Tremendous medical expenses, time, and failed treatments and/or remediations foster stress and frustration between family members. What often results is a falling out between spouses and/or family members that characterizes many people’s mold stories. It can be such an isolating and misunderstood illness for all those involved. That is why I am writing this post.
I’ve actually thought long and hard about writing this blog post and started on it many times before. It is not something I enjoy talking about or writing about for that matter. I guess no one enjoys dwelling on times in their life that were scary or hurtful. Then, when I got the latest SinusitisWellness.com newsletter I connected so deeply with the subject matter, that I thought it was definitely time to share my story. Now, more than ever, I’m at a place where I am willing to put myself out there, because I feel that it is important for me to share some real truths about mold illness in this space. I hope that my story may help someone out there get through their own ordeal. So, without beating around the bush, I’m just going to jump right in with some heavy reality:
Our mold ordeal almost cost me my marriage.
There. I said it.
It is a sad truth that I still don’t like thinking about.
When our mold nightmare began, I think it was a Mom’s intuition or maybe my body trying to warn me about our toxic environment, but I was the first one in our home to be aware that something was terribly wrong. When the “sickness” began and our once healthy family started experiencing constant sinus infections, headaches, tummy issues, etc., I thought that I could just intervene, make some health and lifestyle changes for us and make everything better. I kicked of these changes by cleaning out our cupboards of any “junk” food and ramping up our vitamin intake. I thought that we all just needed to dial in our nutrition to more of a whole foods diet and to supplement with vitamins we were lacking to keep us from getting sick so much and feeling so tired all of the time.
Then, my son began acting out and behaving like he was experiencing sensory issues. He had a facial twitch and couldn’t stop moving or touching things to soothe himself. I sought out the very best therapists and practitioners to help him. I also started him on a special diet and a host of sensory-specific supplements. This marked the beginning of the tension rise between my husband and myself. He saw my actions as overkill and felt like I was overspending on “quack” therapies and overdoing everything. Wasn’t this just a phase that boys go through? I saw myself as a Mom on a mission to help her family, and especially her son. I felt I was losing control of my health and the health of my children. I didn’t feel that my husband was giving the situation the importance it warranted. For others, this disconnect can sometimes be much greater than I am describing. For us, it became a financial problem for which he was the “bread winner,” and I was failing at my job of taking care of our children and home. The roles didn’t bother me, because we have always agreed that this is how we wanted to raise our family, but feeling like every penny I spent on health-related therapies and tools was being scrutinized and resented by him did. However, we were both able to get through this as the issue of where and how to spend money causes friction in most, if not all marriages at some point.
Later, as I began researching our symptoms and visiting various doctors and health practitioners to treat those symptoms, I became “obsessed” with figuring out what was wrong. I fully admit that I had tunnel vision and ,unknown to me at that time, was becoming somewhat manic from hormonal imbalance, nutritional insufficiencies, gut dysbiosis, secondary infections, and insomnia, all caused by the mold. I found it difficult to talk about or focus on anything other than getting us better. At this point, m,y husband and I have worked through this, thankfully, and have spoken at length about that time. While I was convinced that he too was beginning to think I was crazy (more than one doctor had suggested I make an appointment with a psychiatrist before requesting any additional specialist referrals), he was feeling helpless and like he was losing his once happy and go-with-the-flow wife. I was becoming a shell of the Catherine he knew and loved and was increasingly unable to connect with him. We BOTH felt extremely isolated and lonely in a time when we needed each other to lean on the most. Our health continued to decline and the tense dynamic prevailed in our home for almost a year.
Fast forward to the day we finally had a Bau Biologist and Indoor Air Quality Professional, at the suggestion of my doctor (Dr. Dennis), come out to our home to investigate our living environment for toxicity and a reason for the constant and ever-increasing illness in our family. My husband was so agitated at the meeting and at the expense of having the inspection that he could hardly be congenial. I was so elated to finally be looking into our environment for clues to our health problems, that I followed the inspector around, asking a barrage of questions and probably annoying everyone to death. When we sat down at our kitchen table to discuss his findings and conclusions, we were both ready to explode.
What he said, neither one of us was totally prepared for, even though, at that point, I had started being treated by Dr. Dennis, and he had already conjectured that mold in our home may be at the root of our problems. (Note: Dr. Dennis had given me his environmental evaluation, a sinus exam and had TAP tested my clothing at his office.) The inspector told us that until he got the testing back from the lab, he couldn’t be 100% certain of the mold species, but that our entire HVAC system was infested with mold, and that his recommendation to us would be to, “Leave the home as soon as possible and not take anything with us, until the situation could be evaluated further.” As you may imagine, this news hit us like a tidal wave and was difficult to digest and process!
The funny thing, thinking back on that day, was that more than anything, I was relieved. I was so thankful that there was a reason for all of this sickness and for my immune system failing me. I wanted to grab my kids and run out of the front door and leave our home and everything in it behind that instant. You see, because I had been dealing with the doctors’ visits, testing, and failed attempts at different treatments so long, I was ready for relief, progress, and normalcy, even if it meant such a huge sacrifice. My husband’s reaction, on the other hand, was one of anger. He couldn’t believe or accept that our home could be so toxic. In his view, there was no visible mold, and older homes had musty smells and older HVAC systems, so some of this was to be expected. He thought, couldn’t we just clean the ducts and be done with it? Was our home really hurting us?
The inspector went on to show him the pictures of the inside, outside, and videos of cameras he sent through the ducts of our system. All were, indeed, full of mold. The issue wasn’t that the system was old, but that the previous owner had incorrectly installed a whole-house humidification system to the HVAC himself. Instead of removing moisture from the air like HVAC is supposed to do, it was introducing moisture into the system, which, by-the-way, I have no idea why anyone would want to do in humidity-heavy Memphis. Then, because the humidifier had not been angled to drain correctly, it was pooling water. The water would just sit inside the system and, combined with normal dust and dirt from the home, was growing mold lots of mold. Then, the moldy air was blown throughout our home.
When the inspector removed a supply vent cover, we could see mold colonies all over the underside of the grill. It hadn’t been visible to us looking up at them but had been there all along in every single room of our home. Even my husband was sobered by these visuals. It was hard not to feel a little scared about what we had been breathing in for so long. The lab results came later, and were additionally sobering, but that is a story unto itself.
From that moment forward, I threw myself into first leaving and finding us a safe place to live, and then into treatment and recovery. Now that I KNEW what was wrong, I could work on fixing it. And, while that was a reassuring time for me in a sense, because I was no longer up against a faceless enemy, it was also one of the most difficult times in my life physically, health wise, and relationally. Our marriage was the hardest piece of the puzzle, because my husband decided to stay in our home. He was not ready to accept that it couldn’t be fixed and that mold was that dangerous. He was not ready to “give up” on the investment he had made in our house. We put everything we had into buying this home. It wasn’t that he was choosing our home over us; he was choosing to try to make our home work for us. At the time, we both thought the other person was irritational.
Without boring you with the next 2 years of our mold story, I will bring things back to the topic at hand by saying, our being together now, on the other side of the ordeal, has nothing to do with luck, but has everything to do with us both having the willingness to seek help and to be open to hearing about and empathizing with the other one’s point of view. It also has a lot to do with the fact that we both held onto and kept at the forefront of our minds the knowledge that the mold and that the illness caused by the mold did not define us as people or our relationship. I realize how difficult that is when all you are doing is trying to fix your home and fix your body, but you had a life and a relationship BEFORE the mold and you can have one again AFTERWARDS.
This does not happen overnight and does not happen without hiccups, arguments, and hard work in communication department. It also happened, because he was also willing to look at our health, and at scientific evidence and testing to recognize and accept that a toxic indoor environment, in our case a moldy environment, was not good for anyone’s health, even though his symptoms were not as debilitating as mine were. I was able to remove my pride and feelings from the situation to focus on my health and the health of my family. Part of this for me was made in part by a suggestion by Dr. Dennis to try Dynamic Neural Retraining. Now that I have been through the program myself, I believe is extremely important for mold, environmental, and chronic illness patients to explore. It is based on the fact that when we suffer from such a debilitating sickness, we can develop PTSD. It is based on the principle of training yourself to place your focus and energy on rehabilitating the brain and correcting your unconscious stress (the flight or fight response) that is at the root of your suffering. The fact of the matter was that when I was exposed to even the smallest amounts of mold, I would go into a panic. When you learn to retrain your limbic system, your body can regain the building blocks that are needed for healing.
You might be thinking, “That’s great for you, but not everyone has that experience.”
I hear you. You cannot control the feelings or reactions of others. So, what then? How do you get someone to see your point of view or to listen to you when, either, they are not sick in the home, but you are, or vice versa?
It is my opinion that both sides have a serious stake here and need to be valued. Neither person is “right.” What I do know, from my experience, is that there are many points to take into consideration that may help you with your ordeal. If I can save any of you from going through the pain and misunderstanding that we did, I want to. So here is what I learned, and some “non-professional” tips I can offer, if you are going through a similar situation:
1) There are tools and professionals who can help you. Whether those tools consist of actual scientific and lab tests to prove mold illness or environmental mold, or therapists trained with helping victims of environmental illness, do not be afraid to use them or to ask for help. Get whatever help and testing you need to make the problem concrete. This was hugely helpful for us, because once the problem was “real” and diagnosed, my husband could eventually come to terms with it and make decisions about dealing with it.
2) It is important to investigate, research, and get all the facts on the table. Since I was sensitive to mold, investigating and looking for clues would have been beneficial right from the start. A new home is usually the largest investment a young family makes. As soon as we suspected mold, we should have tested for mold and brought in professionals from the start. Unfortunately, hindsight is 20/20.
3) There is usually a lot more going on than just the mold. Everyone involved deserves to be heard and empathized with. Let me explain:
For my husband, there was guilt and fear. The guilt came from the fact that he had found and “chosen” the home for our family. He had also pushed the sale through and dismissed some red flags with the home and during the sale of the home that, in other circumstances, he may have paid more attention to. For example, every time he toured the home, air freshener had been sprayed to the point where, even he, a guy who doesn’t take notice of that type of thing, thought it was obnoxious. We now know that they were masking the musty smell from the HVAC. Also, the family members had all been experiencing “lots of allergy issues,” to the point where they had already removed all of the carpet in the home. He never thought to ask why. Finally, one of the family members had recently been diagnosed with lung cancer and pneumonia but was not a smoker. Had I known that, I would have not wanted to move into the home. All of these facts had never bee discussed with me, since this would be our 8th move in 7 years, this time the furthest geographically, and he felt pressure and stress for me and the kids to be happy and love our new home. When we first arrived, and I began feeling bad in the home and searching for “what was wrong with it,” my husband took it personally, and directed his anger towards me, rather than being open to what was actually spurring those behaviors and feelings. Then, watching all of us get sicker, his defensiveness grew, because inside he felt responsible and guilty.
For me, there was anxiety, stress, and impaired health. The minute we entered the home, my body started to react. My heart would race, my sinuses would swell, my throat would swell, my skin would itch, and I would smell and feel everything at a magnified level. Combine that with the fact that I was only sleeping about 4 hours a day, and I can tell you that I was losing it. I can’t explain it any other way than that I just knew something was wrong. I don’t know if you have ever entered a space where your body knew before you did that you didn’t need to be there, but I can honestly tell you that mine knew. I tried ignoring it and putting on a stoic front, but the sicker I got, the more I just couldn’t ignore it. My behavior became obsessive, anxiety driven, and manic. I felt that I had to convince my husband that it wasn’t safe for us there, and that I had to constantly make a “case” for the next doctor’s appointment, or contractor I was having come out to our home. We were not operating as a team, and it brought both of us down and prolonged our journey to finding what was actually wrong. Looking back, I hate that for the both of us.
4) Almost ALL couples experience stress over financial differences or money matters at some point in a relationship. Regardless of if you are dealing with mold or illness, you have to keep what you are going through in some sort of perspective. While many couples may not experience financial stress at the same magnitude, what you are facing and going through is not unique. It is a definite hardship, but it is a season in your life. While at the time, the financial stress of all of the healthcare costs and potential mold remediation, or of losing our shirts on the sale of the home factored largely into the conflict between us, at the end of the day, we both wanted to make the decision that would reclaim our health, but would not bankrupt our family in the process. When we were able to recognize this common goal, we were able to work together more agreeably.
5) A toxic environment, regardless of if you are “allergic” to mold, causes people who live in it to operate sub-optimally. Your limbic system in a toxic environment is experiencing constant trauma. It is not healthy for anyone, even if you don’t perceive that you have symptoms. Brain scans done on people exposed to toxic mold reveal physical markers of brain injury similar to concussion and traumatic brain injury. This should not be dismissed or ignored. A helpful way to deal with this is to come to a truce, if possible, long enough for everyone to leave the environment for at least 4 days. Also important is to not wear or take any of the clothing from the environment with you. Just buy some cheap clothing a stay with family or somewhere else. Once you are in the safe environment, then try to discuss matters. You will be able to think more clearly, and your body won’t be in inflammation overdrive. Conversations between my husband and I about the home were always better, kinder, more beneficial and more productive when we were not in the setting that was causing the health issues or the conflict.
6) Figure out your “non-negotiables” and stay your path. I know this sounds counter to meeting in the middle, but it really isn’t as different as you may think. My non-negotiable was that I wasn’t going to live in or allow my children to live in a toxic home. I informed my husband, was open to him helping to make plans or coming with us, and then left. I was still open to fixing our home and making it safe, but I wasn’t and my children were not going to live there until it was. My husband’s non-negotiables were that we weren’t going to spend over a certain amount to fix the home, and that he wasn’t going to leave yet. I was ok with that. We discussed options, met together with contractors, and discussed things he would have to do to visit us and be with us in the meantime. I honestly think this helped to keep us together in the end, because neither of us felt backed into a corner.
7) You CAN find health and happiness again, even with a mold illness diagnosis. The road can be long and it can be hard, but there are professionals and excellent products, like the EC3 products, out there that can help you to lead a normal and healthy life. It will not happen overnight. It also does not require that everyone in the home be as rigid about mold avoidance as you are. It does require understanding and knowing when to stand your ground about matters of your health and mold and when not to. I find that as long as my husband is clear about that fact that I will be spending a certain amount on supplements, therapies, and cleaning for mold products and tools each month, he is ok with it. I am clear about my needs to be healthy. Those needs also require me to stay on top of vacuuming, fogging, steaming, and treating things and areas in our home for mold. I do all of this proactively to stay well. My husband helps when he can, but he also lives his life, and isn’t consumed with mold. I am okay with that. It actually gives me some much-needed balance.
Now that I have written all of this, I do recognize, that there are some situations, where, no matter what, people will not see eye to eye. If that is your situation, I am so sorry. I also want you to know that if your health and quality of life are on the line, I think you are doing the right thing to do whatever it takes to get well. I will tell you, though, that if you can get through the initial trauma and shock of dealing with a moldy home and mold illness and figure out how to deal with the situation and diagnosis together, you will both have a valuable asset. For example, when we walk into a rental home, or hotel room, and I smell mold, my husband trusts me now. He knows it is not a healthy place and that we shouldn’t stay there. He is an asset to me, because when I start to panic at familiar symptoms of mold, he helps to calm me down, to think through other culprits and to remember that I have to live life.