- Multiple Chemical Sensitivity
- Interviews
Steve's interview
How did all start?
We moved into a home which had water perched under and seeping up through the slab, very likely carrying fertilizers, pesticides, and other things into the house.
Do you already have a diagnosis? How long did it take you to get it?
We are self diagnosed, although we did as a family visit an Environmental Medicine physician on two occasions in 2000-2010 who were kind enough to write us accommodation letters for our children's schools, and incidental to that diagnosed all four family members with MCS.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Mainstream medicine chose to be useless for people with syndromes like MCS in the 1960s as the outcome of the politics which elevated "Allergy" to mainstream medicine and threw the "Clinical Ecologists" (now Environmental Medicine) under the bus. While I have had a very good relationship with my allergist for 25+ years, his specialty does not allow him to recognize or treat MCS. We had a very good experience with an occupational medicine toxicologist at the time of our sick house as well, but once we realized the testing would not identify the chemical which had poisoned us, there was nothing more he could do. Environmental Medicine has been most useful, but we have made very sparing use of that very expensive specialty.
What has been the most useful thing for you so far?
Avoidance. We paid to tear all of the particle board cabinets out of the kitchen and baths of our replacement home, instead using cabinetless designs, and that avoidance has made a big difference. Ours has been a fragrance free home for 24 years, with no fragrance in personal care products, cleaning products, laundry products, and the like. We carefully quarantine clothes upon returning from the outside world and shower; change sheets daily and towels per shower; change clothes 4x a day. Yes, the washer runs 12 hours a day 7 days a week.
What have been your biggest difficulties?
Because of active PR efforts to avoid litigation liability by the chemical industry and probably other interested parties, accommodation of fragrance/solvent/particle board/etc sensitivity has been hard to come by, and typically has to be negotiated under the table rather than through formal disability processes. We were very fortunate that I was able to continue working for 21 years after MCS, and was able to retire at age 60.
Adapting off campus college apartments for our two MCS children was difficult and very expensive but in the end successful. Both are now university graduates.
20 years after moving into and adapting our new home, a new neighbor moved in next door who uses highly scented laundry products. Her dryer exhaust blankets our house covering most of our downstairs air infiltration points. She is utterly unwilling to stop using scented products. We have been trying to mitigate this but a lot of her laundry stench gets into our house and makes us function less well on a regular basis.
A neighbor burns wood regularly in the winter months. The smoke collects against certain air infiltration points of our home and comes in, again causing us health impacts. We have mitigations for most but not all of this.
How has your social and family environment reacted? Have your social or family relationships changed?
My parents were supportive throughout the sick house and went out of their way to be fragrance free when the visited us. The last time I saw my siblings was at my father's funeral a decade ago. We ultimately withdrew socially because we could neither entertain people in our home, nor be in their homes, nor be in a church, nor be in a mall, nor be in a lot of other places. We supported our children having friends, guests here, going to others' homes but over the years they learned how much impact that had and pretty much stopped. So we are a nuclear family which pretty much stays home and does things together, although our son is saving for his own home and ultimately anticipating a family.
What things have you stopped doing?
We stopped going to church.
We stopped going to malls and most stores.
We minimize doctor and dentist visits because of fragrance contamination of those environments.
We stopped going to my family reunions, which was sad
We stopped having friends, at least in-person friends, and all the related entertaining.
I cut way back on business travel, avoiding it like the plague
I arranged my work to telecommute most of the time, so I wasn't in fragrance and particle board at work
We stopped traveling for pleasure
What do you think about the future?
I look forward to helping my MCS children get established in the world (our son is a practicing attorney) so that they are already established as self sufficient by the time we can no longer provide the MCS-supportive environment for them.j
I would also like to catalyze some progress by science/medicine, which is kind of stuck on MCS because MCS as described by patients like me simply cannot occur given the basic theory underlying the practice of medicine -- and medical research -- today. That's a stretch goal, but I can already bring some insight about how to think about MCS to the table, even if I have all of the details wrong.
So far, which years have been the best years in your life? What have you done during them?
All of my life has been best years. Can whine about what was hard about any particular time, but there's always been something fun and something to celebrate.
What would you like to do if you didn’t have your condition?
I'm not sure I would do anything different -- maybe get back into the workforce (my career was in tech) for another 5 or 10 years -- help my kids launch much more normal lives -- maybe even socialize or even travel again.
If you had to describe your life in a sentence, what would it be?
My almost 40 year career in tech R&D introduced me to a wonderful woman; we married and had two wonderful children; we had and overcame some obstacles with MCS and went on with our lives, albeit with different constraints.
Finally, what advice would you give to a person in a similar situation?
If something is poisoning you, whether it's in your home or at work, cut your losses, get out, leave everything behind. You can always start over, but what you can't do is recover your health from the permanent effects of the poisoning. The disability you may get is not recognized or treated by medicine, not covered by insurance, not covered by disability insurance and hard to get social safety net support for. You want to avoid getting MCS at all costs.
