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.
Thank you for writing this post, and for your entire page! I really appreciate you. I’m at the point where my husband has come to terms with the poison atmosphere, but now we’re arguing about throwing stuff out. We are moving to a new place next week. He wants to clean everything with vinegar, leave books and clothes out in the sun and call it done. I’ve tried to explain that might not be good enough, but he doesn’t listen. Help!
I don’t know about your husband, by mine does very well when I deal with him based on facts. If I bring emotion into it, I lose him completely. I would advise showing your husband information regarding vinegar and its inability to eliminate mold spores and mycotoxins effectively. I would also show him the 3rd party lab report on something like EC3 to use on your clothing, etc. Why go to the effort with moving or remediation of the living space, if you are going to then recontaminate it with belongings that were mold-exposed? We also used our experience as a reason to streamline our lives and to get rid of all of the excess stuff we’d been holding onto. With books and things that have sentimental value, I would just seal them in bins and deal with it later. The psychological piece of having to make so many decisions at once is very hard for some people–which then makes letting go of things even harder. I found that many things we thought we needed to keep, were easier to let go of once we weren’t in the middle of the mold hell. Sometimes too many decisions, are just too many decisions, and it’s not about the stuff or cleaning the stuff, but about maintaining some control over a situation that feels totally out of control. I don’t know if that helps or makes sense, but I hope it does.
Thank you for sharing the end of your story. I am just finding this now. I was at the edge of my seat wanting to know what happened lol. I’m glad you are still standing and I’m sorry you and your husband had to endure so much.
I’m in a similar situation. We are in the beginning stages of testing. So far there’s moisture behind the tiles in the bathrooms. I have been suffering from mold illness symptoms for at least 5 years that I know of (we’ve lived here for 14 years). Prior to that I had many symptoms as well, but I thought it was from the Lyme and co infections.
I can see all my husbands defenses come up as we begin this process. Hearing your story, and your husband’s, is helping me have more compassion for him and what this possibly brings up for him. If your husband ever did write his side, I think it would be beneficial for couples.
I fear what this will entail and hope we will be able to handle it financially, emotionally, and physically.
I hope things have continually gotten better for you and your family.
Thank you so much for writing. We are in such a better place now. Marriage is hard sometimes, but add mold and chronic illness to the mix and then it can get VERY hard. Rick and I have talked about him writing his side of the story and I hope he will. I also think it will help so many people to read it. He is a gentle, kind man, and having his wife debilitated, his son’s sensory issues getting out of control, and his life savings all seem to blow up on him was a lot. He also had to watch us leave when I just couldn’t live in the home anymore. That is a subject that is still hard for him to revisit. I also think many men are “fixers” so when they cannot just fix the situation and make everything better, they feel very helpless. Anyway, I appreciate you writing. Hopefully, I can post his story soon.
This is a dangerous post. There are individuals that are hypersensitive that cannot tolerate toxic environments. Retraining your limbic is system is not a viable solution, avoidance of the toxic poison mold is. When you say this, you are setting families up to believe that their loved one is crazy and needs DNRS. Not cool.
I am not sure how I got off on the wrong foot with you, but I assure you, I DO NOT believe that DNRS is the answer. I also believe the the #1 most important piece of healing is getting out of the toxic environment. PERIOD. You cannot heal if you are still being exposed. I do not believe that I have ever written anywhere on this blog that limbic retraining is an answer or a solution. It is just another tool. It can help some people get out of fight or flight enough to being healing or to begin being able to sort out their situation enough to leave or to begin remediation. I am just a person–not a doc, IEP, or medical professional. I am just trying to share some tools that could possibly help people.
Thank you so much for writing this post! You have described my current situation with my husband exactly right now. My husband is completely opposed to believing that mold is impacting my son’s health, my health, and my daughter’s health. We even have some lab/blood work indicating mold illness for my son. My husband refuses to believe that lab work. We have had a more thorough mold inspection and he still disagrees that it is a health problem because he says that mold is everywhere and the mold counts are “only” 2800 in my son’s old bedroom. He might believe it more if the mold counts were over 300,000 or more. He too just today called my doctor a quack. He has threatened to “lose his shit’ if we have to tear out shelves he has put in in order to replace HVAC system. He talks to all of his guy friends that support his position and they think I am the crazy one. I am not sure our marriage will survive this. We are currently waiting on estimates for our remediation which will more than likely cause more friction, tension, etc.
I am so sorry. I feel for you. I do not know what to tell you except for you are not crazy. Mold devastated my marriage, but somehow, my husband did see the light. I had to leave and take our children to a safe place in order for the healing to begin, but it finally did. I will say that the difference in our children’s health and personalities was what turned my husband around. It was so obvious so quick that they were healthier out of the home that it was undeniable. My son’s labs improved almost immediately. I took much longer to heal but was older with a history of health issues that piled up and came to a head with the mold. Anyway, know that you are not alone. Continue to move forward and try to do so as positively as possible. Your outlook on the situation can color his perception more than you know. I never did anything out of anger towards my husband; I tried to make all actions about getting us healthy and whole again. That helped me to separate what was happening from my feelings about him. I need to have Rick, my husband, write an article. I do think it would help all of the husbands out there to read our story from his perspective too.
From my personal experience, you are incredibly lucky your husband came around and is understanding. Like Beth, my husband is nothing but defensive about the issue despite several subsequent positive tests for high levels of mold. I know he’s done his very best to remediate the situation but he is more concerned with his investment in the home than anything else. Thankfully for me, the house is a second home (and as in your situation, he overlooked red flags prior to purchasing to include an extensive amount of water damage, but went ahead with the purchase anyway.)
Early on I spent a great deal of time in the home in the interest of our relationship and not my health, for which I paid a very high price. I now refuse to stay in the home which has caused a rift in the relationship I fear cannot be fixed. Again, I am grateful this is not our main home, as I’d have been long gone by now. That said, it’s unlikely our marriage will survive this crisis, which we’re now 4 years into.
I appreciate your article and bringing this important issue to light. It helps those of us extremely sensitive to the health problems caused by mold to feel we are not alone, and that means the world.
I am sorry you are going through this and that your relationship has suffered. I truly feel for you and honestly do not know how or why we made it through. There were many days I felt stuck, angry, and deceived. I just kept doing whatever I could to take one step forward everyday. Thankfully, seeing me and the children heal and change for the better out of the home is what caused the change in my husband. I guess it was the light at the end of the tunnel that he needed to stop being angry and resentful of me and to start helping us. Thank you for writing. I hope and pray that things get better for you.
THANK YOU SO MUCH for sharing your story!!! I too, have major mold sensitivities and have experienced very similar reactions since moving into the rental house we’ve been in now for 8 years. My condition has gotten worse and I feel like I’m losing my mind! My husband doesn’t seem to have the same reactions, however, he and my son’s sinus problems have gotten worse. We don’t sleep sound anymore….and my head isn’t feeling right. I know in my gut….it’s mold! I live in Florida and feel like there really isn’t any escape from it….it’s very humid here and all around me. I have to tell you that in reading your story….I felt like I was reading my own words….I can’t thank you enough for SHARING. There are those of us who suffer more then others with mold….I am one of those people. Here’s where I’m at now….I want to move & we are looking, but with (as you mentioned) PTSD from the mold exposure….I’m constantly thinking….where am I suppose to go that doesn’t have mold?? My fears are all too real! Any advice from you (since you have lived through this) would be so greatly appreciated. God bless…..
Thank you so much for writing and for your kind words. Putting myself out there is hard, but when it helps someone, it is ALWAYS worth it. I don’t know if you read my latest blog post, but ask and you shall receive! It is actually ALL about finding a mold-safe rental property. Everything, except maybe the landlord questions, can be applied to purchasing a home as well. I am going to write a separate post about that soon. Here is the link to the post: https://moldfreeliving.com/2018/07/24/find-mold-safe-rental-property/ if you want to go right to it. I completely understand and empathize with you about the mold PTSD. It is so real. My belief is that when something like mold robs you of your health and feels so out of your control, you give it almost a villain persona. For quite a while, I was always fearful of mold lurking around the next corner to make me sick again, and to start the cycle over. What I will tell you is that part of getting well is also working your thought patterns. I’m also going to write about this soon, but rather than being scared about possible mold, focus on how empowering it is to KNOW what you do about mold and how it effects your body. Because you know, you can take measures and steps to avoid it. When you take those steps and take control of your home search by actively focusing on best practices for your mold allergies, you will automatically feel better about the home you choose in the end. I always like to think about the places where I felt best and enjoyed the best health. I think about what those places had in common, where they were located, what my life looked like then. Then I try to find those things in my current situation. Anyway, I hope this helps. Read the new post and as always, send me any specific or additional questions and I will do my best to answer.
I am glad your marriage survived! Thanks for being so transparent. Did you remediate or leave your house?
Hi, Sheri. Thanks for reading. I wrestled with making the post longer to include everything, but feared people would stop reading. Here’s the short version of the “rest of the story”: The kids and I left and took nothing with us. My husband remained in the home for 3 months. He then left and moved in with a colleague. We got 3 different professional remediators to come in and make recommendations. We decided to try to remediate. We removed everything from the home and disposed of anything that was not metal, plastic, or some wood, and practically stripped it down to the studs. We worked with a professional remediator and a local HVAC company to remove all ductwork, systems and insulation. We even stripped ceilings. We had the “insides” put back together with all new systems, ductwork, insulation, dehumidification, and whole house filtration. We also have water filtration and redid ventilation and air flow inside the home. We moved back in summer before last. We have been ok in the home so far. I constantly test, “clean for mold,” treat our bodies, and put in the hard work to keep us well. It took us to the edge financially, but we are still standing.