Finding My Way through Multiple Chemical Sensitivities
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| Susi Lippuner WVE Member |
Had I known then what I know now, the depth and severity of the multiple chemical sensitivities/environmental illness that I developed would have been far less. I fit a common profile: female – with Chronic Fatigue, some thyroid inconsistencies, upper airway symptoms and a past history of adverse drug reactions.[1] I had no significant discernible cause of my symptoms, and I lacked in the knowledge and resources for the help that I needed.
In 1992, Dr. William Rea documented that 13% of his patients suffering from environmental illness became ill after an acute chemical exposure, 24% of his patients could trace the onset of their illness to an overwhelming massive trauma, childbirth or surgery, and 60% percent of his patients had no significant discernible cause of illness.[2] It is commonly estimated that 12 – 16% of the population reports being sensitive to chemicals with approximately 4 % of these being affected daily by exposure to chemicals.[3]
Since his study, we have seen an increase in Multiple Chemical Sensitivity Syndrome subsequent to the Gulf War and the attack in 2001 on the World Trade Center.[4] We have also seen an exponential proliferation of new petrochemical based chemicals and fragrances.
Acute and Chronic Exposure
One might say that the “lucky ones” are those experiencing an acute exposure. Acute exposures are noticeable: a shocking and severe wake up call, a change from one discernable state to another. This shock allows for a cry for help from within, as well as for recognition from others, that something is different, wrong, and deserving of attention. If the affected individual has previously been in good health and gets targeted proper treatment, there is great hope for recovery.
Many chemically sensitive people are not so fortunate. The changes in my body and health were gradual and difficult to distinguish. Without a clear change in my previous state of health, I did what many chemically sensitive individuals do – I adapted gradually to an increasingly restricted lifestyle. Since my early adolescence, I struggled with hormonal discomfort and irritable bowel syndrome. Prior to this I had several incidents of major trauma – I was run over by a car at age 6 which weakened my digestive system, and I experienced significant birth trauma which left me with an immature nervous system. In my early 20’s my health took a downward turn following an anesthesia reaction after surgery for a miscarriage. This final event, layered on top of the others, contributed to my beginning to notice the fragrances in the grocery store laundry aisles. I already had some food intolerances and one obvious allergy – cats.
Like many chemically sensitive individuals, my vulnerability to chemical injury was a combination of sensitivities resulting from genetic, developmental, trauma, nutritional, and environmental factors. Over time, I became increasingly sensitive to such common substances as perfumes and other fragranced products, fresh paint, tobacco and wood smoke, new carpets, formaldehyde, molds, and pesticides. My attempts to get help for my symptoms were unproductive. Most physicians didn’t have training, belief, or knowledge of environmentally based factors contributing to illness. Misdiagnosis was and continues to be commonplace. Depression, anxiety and other stress responses often accompany the physical issues. These stem from the chemical injury(ies), malnutrition, sleep disorders, isolation and multiple losses that accompany and result from the illness process. All of this was true for me.
Losses and Healing
I also suffered the losses that most people with severe environmental illness offer. I lost my job and my income, my standard of living and ultimately my home. I lost my sense of identity, certain significant relationships, and my ability to move freely in the world. I lost my sense of agency and autonomy, my ability to participate in social and cultural events, my hobbies and my pet.
The losses were tremendous, and devastating. It still hurts today, 20 years later, when I look back at the transitions I went through. Yet there were also important gifts from this process. I finally have been able to truly heal. I spent years spinning my wheels going downhill, afraid, misdiagnosed, and lacking information. With the proper diagnosis and tools, I was able to start rebuilding myself from the ground up on every level. Unparalleled spiritual and emotional healing has resulted from entering this completely uncharted territory. This healing has extended into my family and other relationships. I have found a new purpose in my life. I was always an environmental activist, and care deeply about the planet and people’s health. Now I have significant tools to share that help people become empowered.
Many of my chemically “sensible” friends credit me for the increased level of health they and their families experience through the information that I bring. Through my awareness of the impact of chemicals on health and the environment, I am able to make a difference in people’s lives, their indoor air quality, in the environment around me, and in raising awareness about these pollutants that also contribute to climate change. I would not trade the growth and learning that I have acquired over these years as difficult as it has been and continues to be.
About Susi: Susi Lippuner is a 59 year old woman who has transitioned from “normal” to being severely disabled with Environmental Sensitivities, and is now mindfully moving towards wellness.
Resources:
- A compendium of recent articles about MCS: Special Issue on Ecopsychology and Environmental Sensitivities: Chemical, Electrical, and Beyond http://online.liebertpub.com/toc/eco/9/2
- Resource Site: http://www.mcsresearch.net/index.htm
- Planet Thrive: a networking and resource site about chronic illness http://planetthrive.com/
- Managing Illness Related Anxiety and Depression: http://limbicretraining.com/
- Two Well Written Patient Stories, one who recovered and one who didn’t: Intentional Healing, Sherwin, Jennie, Changemakers Books, 2012; and Allergic to Life, Treat, Kathryn, AuthorHouse LLC, 2013
[1]A Comparison of Multiple Chemical Sensitivity with Other Hypersensitivity Illnesses Suggests Evidence and a Path to Answers, Busby Laurie Dennison, Ecopsychology 2017 9 2, 90 -982.
[2]Chemical Sensitivity, Vol 1, Rea William, 1992
[3]Introduction to the Special Issue on Environmental Sensitivities: Living on the Margins with Access Denied, Gibson Pamela Reed, Ecopsychology 2017 9 2, 53 -59
[4]The Many Faces of Multiple Chemical Sensitivity, Johnson Alison, Ecopsychology 2017 9 2, 60 -64
Thank you for sharing this powerful story, Susi!
Thank you for taking the time to read it!
Thanks for posting. It’s vital to get the word out on MCS. There’s one comment you make that I heartily disagree with. I had acute carbon monoxide poisoning, which triggered my MCS. My struggles may have been different than others with MCS but in no way am I ‘lucky.’ Figuring out the trigger was helpful but my struggle is very real and my losses resemble those of many others with MCS. Perhaps a better way to phrase it would be to say that for some the cause is clear-cut so that particular aspect part of the journey may have been more straightforward for us. Thank you.
Susi, you are very courageous woman!
Your story is incredibly inspirational Susi!! Thank you for sharing this!
Thank you for sharing your story…we are currently seeking direction for a man of 61 who has gone through all of this…he has a traumatic brain Injury as well from a car accident..been to numerous doctors including one who claimed to specialize in mcs…any up would be appreciated and shared..thank yoi
Thank you Susy for sharing your story. My story is eerily similar to yours in so many ways. I was always working around chemicals, renovated my house, had a stressful friendship go horribly wrong, then came down with the flu. I dislike all of the sacrifices I’ve had to make to feel well but I will not spend my days being angry, stressed, or unhappy with my current situation, I choose to be happy and productive and focused on living as healthy a life I can live!
I’ve had chemical sensitivities….I DRANK Dandelion Root tea (12 cups / day for six weeks ) and got significantly better.!
I’m not a doctor and I’m not saying this would work for everyone but it did for me!!!
I began to suffer many of the same allergies you described in 2012. I also suffered some of the same relationship woes because of them. Then after 4 years of worsening health and allergies I was diagnosed with stage 4 ovarian cancer. My chemical sensitivity has skyrocketed while on chemo these last three years. I feel for you and appreciate you telling your story. I have felt so alone in all this. Thank you.
Sincerely,
Victoria
Everything you’ve written has resonated with me as well. I also read your publication “A Comparison of Multiple Chemical Sensitivity with Other Hypersensitivity Illnesses Suggests Evidence and a Path to Answers” and was on the verge of tears. I have lived with an elevated IgE, WBC, positive ANA…for years and am completely and utterly exhausted in the thought of even going to another doctor only to leave feeling worse than I did prior to walking in. This condition robs us from any and all quality of life. A recent skin patch test showing so many allergies/sensitivities to chemicals, left my doctor scratching his head, yet still couldn’t come up with a plan to help me. I am even allergic to my own shoes. I’ve now become a hermit and am too embarrassed to tell others that I am allergic to life. It’s comforting to know that I am not alone, yet sad to know that so many are still having to live this way without help or answers. I would love nothing more than to get involved…spread awareness and or do anything I could do to help others like you’re doing. Bless you and thank you from the bottom of my heart for taking charge, helping others and being so brave in sharing your story.
Thank you, Susi! Do you mind sharing how you were able to heal? I am 10 years in and improved but not healed.
Susi, Thank you for sharing your story. It has given me hope. I am in the same boat as many others…I have lost everything due to an acute inhalation of mold spores & chemicals from the duct work in my house. I couldn’t go back into my house & lost it & everything in it. I lost my car & then another due to cross contamination & increasing sensitivity. Eventually my 2 kitties, Tinkerbell & Venus went to heaven because of seizures due to the mold exposure. I have moved 20 times in 6 yrs. & 3 times in the last 11 months trying to find safe air. I thought I found a safe apartment only to start increasing becoming more & more sensitive to more & different chemicals. I am alone (but for God) & I am suffering horribly. I don’t know what to do or where to turn. Can you “please” tell us how you healed from this MCS nightmare. I am tired & weak & suffering tremendously. I am holding on to my faith in God.I don’t want to die. Thank you for caring & sharing. With love, Bobbi ?
My conditions mcs and more from.Chemical exposures at work .i would dearly like to connectivity others in similar injury and create support group .I’m weak touring this .but have great doctor who deals specifically with this health problems
I would also like to know how you were able to heal. My 25 year old daughter is just about giving up on life. Her chemical sensitivities sadly rule her world. We are a household of 4 and it is extremely difficult to live in a way that is conducive to what her extreme needs are. We need help as a family, but she needs help in getting better!! She is emaciated and can barely function, with Lyme disease on top of her issues. It is so very heartbreaking to watch her go through this and I feel so helpless. She needs help before it is too late!!
I always appreciate hearing MCS stories from others. Thank you!
At the other end, I adamently disagree with a few points. First, those with acute exposure are the lucky ones. I got serious exposure in the mid/late 1980’s when I moved into brand new condo construction that just opened up, when 1.) MCS was not recognized, no info about it and no docs, even ortho-molecular docs, who had any expertise/training in environmental illness; 2.) I was battling other serious opportunistic viruses like EBV, HHV6, cytomeglovirus, liver disease, premature menopause in my 30’s, and list goes on.
After losing the 40’s decade of my life, all assets, struggling with overwhelming debt to keep roof over my head, etc, I did get to a point after taking my health into my own hands and was able to manage MCS, as long as I lived in my own space and could control my environment. I don’t believe one is ever cured.
Fast forward almost 40 years and my MCS has gotten retriggered for factors I am not 100% sure and actually in some ways more sensitive and worse than my acute exposure. I have some guesses why but even my functional medicine doc is mystified, esp. with weekly Vic. C/gluthathione IVs for over a year, lots of brain assessments and technologies, genetic testing, oxidative stress testing, etc. I’ve always been a purist with food, my environment, etc.
So my message to all my MCS friends (and you are friends) is MCS can come back no matter how long you seem symptom free. It’s a complicated condition that has no single, one size fits all solution. I do believe getting older (70 now) has changed the MCS dynamics for me.
Thanks for sharing your story.
MCS is real. Wikipedia and other medical sites don’t want to recognize because it’s too difficult to treat by the Western Medical paradigm, which is you either have an allergy or you don’t. Plus, it doesn’t earn money for pharmaceutical corporations.
There needs to be more work done to bring MCS to light. Join an MCS support group, share your story, help others, and begin a dialogue about what can be done to get more recognition and research for this, to help others and future generations.
I am so glad you are doing better. It really is not often I can talk to someone who truly understands. I was a bit surprised to read the trauma discussed at start of symptoms..because it is something I had wondered, that or possible hormones. I have IBS and sleep disorder (narcolepsy) which you mentioned, so am very interested in your story. I was going through a divorce with concern of that husband being inappropriate with our 2 year old, so the sress was significant. Was hospitalized with Sepsis from a deep cut..all this happening and suddenly my ability to smell things was extremely sensative. Though all smells were strong..certain ones would cause skin rashes, headache, brain fog, agitation ..laundry products and cleaners were unbareable. The blessing was ridding those products, clean eating and living. Though it has complicated my life, it has been 12 years now, things have much improved over the years. I always hoped it would go away, at this point I don’t think it will. I have the diaganosis of MCS, but it is clear that some doctors believe in it while others do not. It helps to know that many illness shared that same issue at one point, Asthma and Arthritis were considered mental illness at point.
A great and helpful account. Thank you.At now 83, diagnosed MCS 1974, I much appreciate your accurate and clear personal sharing this. Thank you.