Poverty and Multiple Chemical Sensitivity

Posted on Oct 15, 2008 by Susie Collins in Blog, MCS, Susie Collins

Blog Action Day 2008: Poverty

blogactionday

Blog Action Day is an annual nonprofit event that aims to unite the world’s bloggers, podcasters and videocasters to post about the same issue on the same day. The aim is to raise awareness and trigger a global discussion. Blog Action Day 08’s topic is POVERTY. Here is my contribution.

Coping with Multiple Chemical Sensitivity is a challenge on every front in a person’s life. It impacts employment, housing, social activity, personal relationships, personal care, eating habits, exercise, recreation, and leisure. Health care becomes confusing and disorienting because medical doctors do not recognize MCS and therefore do not know how to help. To add insult to injury, some MDs believe MCS is psychosomatic, and either dismiss complaints or send the patient off to the shrink.

And when people with MCS are forced to seek out alternative health practitioners, it’s a crap shoot. While most practitioners– acupuncturists, nutritionists, dentists, and others– have good hearts and surely want to help, chances are pretty good that the patient will be led on a wild goose chase, and waste precious financial resources on alternative therapies and supplements, hoping for that magical cure.

But a cure for MCS is most likely going to be elusive. After all, MCS is not a disease or allergy, it’s a reaction to low level poisoning from toxic chemicals. So the more practical course of action might be for the sufferer to find safe housing and employment, stay away from toxic friends and family, dump toxic clothing and replace with natural fabrics, eat organic foods, buy a HEPA air filter and vacuum, find a good water filter, move to a place with cleaner air. But how easy is that course of action for anyone let alone someone who is sick with depleted resources?

So you can see how MCS can catapult a person into poverty. When forced to leave employment because the air is too toxic to breathe, there is no paycheck. When there is no social or familial support system and no safe housing, a person is out on the street. If there’s not sufficient money for fresh organic food, nutritional supplements, air and water filters, and a HEPA vacuum, then a person’s health further deteriorates. And a life on that edge can very quickly spiral into poverty.

This is why too many people with MCS are sleeping in cars or in aluminum trailers in a friend’s back yard. Many who can’t find safe housing or employment hunker down, strip down, go zen, go without, and struggle to adapt to the newfound state of limited resources. This is the world of poverty, and if anyone with MCS thinks this scenario isn’t a heartbeat away, they are fooling themselves. There is no safety net for people with a health condition not recognized by the government or mainstream medical community.

Such is the life of canaries. It’s not just sensitivity to toxic chemicals that people with MCS live with, it’s acute sensitivity to the social injustice of a negligent health care and governmental system that refuses to even acknowledge there’s a problem.

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If you’d like to learn more about Multiple Chemical Sensitivity and poverty, Grist: Environmental News and Commentary covered the topic in 2006.


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15 Responses to “Poverty and Multiple Chemical Sensitivity”

  1. Kitrona

    16. Oct, 2008

    Good post. Most of those points apply to anyone with a chronic illness, and invisible chronic illness especially. It’s scary how close to the edge people are living, and MCS sufferers moreso than most. May the day that MCS is recognized as a legitimate problem come soon! (I don’t have it, but I can imagine it’s as frustrating to have your health concerns dismissed for you as it is for me, with fibromyalgia. And that’s without adding in the actual effects of MCS…)

    Reply to this comment

  2. Susie Collins

    16. Oct, 2008

    Kitrona, thanks, it was a tough post to write, I struggled with it. Yes, MCS and fibromyalgia have a lot in common on different levels. The lack of a safety net for people with difficult-to-diagnose health problems just makes me wild. I can’t believe what shit health care system and social services we have in this country.

    Have you seen Michael Moore’s movie Sicko? I’ll see if I can post the trailer. He makes the case so well: Everybody should have full access to health care and no one should have to worry about ending up in poverty because they are ill!

    Reply to this comment

  3. Deborah

    19. Oct, 2008

    A post that needed to be made. I hope you don’t mind, but I posted a link to your article at toxboard.com, blackmold, where I’ve been a participant off and on for some time now.

    I have been saying, only slightly jokingly, that I have been the proverbial canary for the last 20 plus years.

    Reply to this comment

  4. Susie Collins

    19. Oct, 2008

    Thanks for sharing, Deborah! Some interesting discussion at toxboard.

    Reply to this comment

  5. Jhannote Thibo

    22. Oct, 2008

    Dear Susie,

    Thank you for putting this condition front and centre so succinctly and poignantly. You have hit the nail right on the head on all counts. I have had that all my life and there was no name for it until the past few years. When I was younger I was more resilient, but, at age 68, it’s not so easy. it is a most distressing situation to be in. I have had to fight to be on disability benefits and I struggle daily for a safe place to be. Accommodation is the most important element that remains elusive. Affordable safe housing is non-existent. I have had to move 4 times in 6 years which is stressful and exhausting to say the least.

    For those who are afflicted with MCS and/or Fibromyalgia who are reading this, Women’s College Hospital in Toronto, Ontario, Canada has an Environmental Illness Evaluation program in place. One does need a referral from a doctor to participate and there is a lengthy detailed questionnaire to complete before getting an interview. This brings the condition to the fore front in the medical profession. Good news.

    Great article written with care and empathy. Thanks.

    Jhannote Thibo

    Reply to this comment

  6. Susie Collins

    22. Oct, 2008

    Thank you for your comment, Jhannote. I’m sorry to hear of your struggles.

    Thanks for the info on the Environmental Health program at Women’s College Hospital. Here’s the link for anyone who would like to check out the program: http://www.womenscollegehospital.ca/programs/program76.html . I’m going to add it to The Canary Report’s Resource page.

    Thanks again. Be well.

    Reply to this comment

  7. celia

    01. Dec, 2008

    beautifully done–

    Thank you–

    nothing more really needs to be said–

    Reply to this comment

  8. celia

    01. Dec, 2008

    well, I guess that’s not true either; I have come to realize that there are a lot of “layers” to this–

    we are so accustomed to being part of a culture with a language; when we find ourselves outside that culture, we have to develop a new way of communicating, and sometimes it is painful–

    uncovering the “secrets”, as it were–

    I am one of the very blessed ones; my father was a scientist AND had MCS–

    he helped me on my path–

    Reply to this comment

  9. sam

    26. Jan, 2010

    I know it is late, but I thought I’d share a bit on hte topic.

    Another reason MCSers can be poor (or anyone disabled) is the political bias.

    For instance, someone on SSI must remain poor to continue to receive Medicaid. So let’s say you want to try to save up money so you can go to a natural Dr. You are not allowed to have more than $2000 in your bank account. An NP may cost at least that much.

    Same with the disabled on SSDI. Older people who have Medicare can work and make all they want. The disabled may only make up to $14,000 a year.

    There are some categories of SSDI such as Adult Disabled Child who are not even allowed to marry!

    So someone on SSDI and Medicare/Medicaid as an ADC cannot marry, cannot save money, cannot work………tell me how they are supposed to “live the American Dream,” or even get by? Let alone see a Dr that will actually help!

    Reply to this comment

    • Susie Collins

      26. Jan, 2010

      Aloha Sam, thanks for your thoughts, it’s never too late to comment on this important topic. The weaknesses of the US social net is a travesty for the disabled, esp for those with MCS. That such a weak social policy is happening in the US, one of the wealthiest countries on the planet, is unbelievable. It results in too many people with MCS living the American nightmare. It’s extremely unjust, breaks my heart.

      Reply to this comment

  10. Connie Rae

    26. Jan, 2010

    Sam’s comment brought this to my attention and I read it and tried to post the following paragraph to my status:

    “But a cure for MCS is most likely going to be elusive. After all, MCS is not a disease or allergy, it’s a reaction to low level poisoning from toxic chemicals. So the more practical course of action might be for the sufferer to find safe housing and employment, stay away from toxic friends and family, dump toxic clothing and replace with natural fabrics, eat organic foods, buy a HEPA air filter and vacuum, find a good water filter, move to a place with cleaner air. But how easy is that course of action for anyone let alone someone who is sick with depleted resources?”

    …but the vital words were still too long..It is a complex issue, but necessary to discuss.

    Reply to this comment

    • Susie Collins

      26. Jan, 2010

      So true Connie– that is the most basic medical care we need: the devices and technology that can protect us from the environmental assault of toxic chemicals. A diabetic is provided testing kits and insulin, we need our filters to ensure safe air and water, and we need safe housing to ensure our well being and health. These things are not cheap, and impossible to obtain if you have lost or left your job due to your illness. Navigating the decisions alone is unbelievably hard when you are suffering cognitive disability due to MCS. This point is precisely where the public safety net should be implemented, to care for the weakest, the disabled, the infirm. And it’s precisely the point where people with MCS are abandoned.

      Reply to this comment

  11. amy and Lucy

    26. Jan, 2010

    Abandoned and BETRAYED. The government is suppose to regulate what is safe-

    Ha – I am being denied treatment because the FDA and the AMA do not accept MCS as being valid. “There is no acceptable protocal for treatment” “Its not mainstream enough”- and the worst “Its all in your head”. Is all my doctors will now tell me.

    This is after being treated for 4 years- Overnight, I no longer have asthma- and now I react to oders-
    If I could smell I would be able to AVOID the fumes!

    Since I lost my job, I am no longer trapped in the Worker’s Comp system- I thought this would be a good thing. Because too many of my exposures happened at work, and I have no claims, (because I lost my job) I may never be allowed to see anyone in Environmental Medicine because it is so entwined with Worker’s Comp-

    All this happened because I started to ask to see a specialist- as in someone who has a clue what chemical sensitivity is. No one in Occupational Medicine knew what to do other than avoidance-

    SSDI will not accept MCS as a dissability- If you do get it, you can’t have any savings or investments- you are trapped in poverty.

    What we need is Upton Sinclare -the author of “The Jungle”. Without his work we would not have the FDA we have today.

    The cover up of the dangers of chemical products is bigger than what the tabaco compaines got away with for years-

    Who would have ever guessed that anti smoking laws would actually work?

    Reply to this comment

    • Susie Collins

      27. Jan, 2010

      Aloha Amy,

      I’m so sorry that you are caught in this state of limbo. I’ve not given up on thinking that you will find help, though. I think you still have some avenues to explore, I know for sure that you need to have legal counsel take a look at your case and explore avenues of recourse. You have so many obvious physical signs of illness, I’m mystified as to how they can be dismissed. Usually the problem with MCS claims is that the symptoms can’t be seen or measured by normal testing protocol. I do hope legal counsel can help you resolve this denial of care.

      You are always in my thoughts.

      Aloha,
      Susie

      Reply to this comment

  12. samantha

    27. Jan, 2010

    Amy and Lucy-

    Where are you located? As Susie said, do not give up! It is better to be trapped in the poverty of SSDI/SSI than have no money to eat.

    There are also secondary problems caused by the MCS that many have been able to get SSI and SSDI. A friend of mine began having bizarre seizures because of MCS issues. She was simply not able to work. It took a while but she got SSI.

    Another friend I know became so depressed because of all the issues surrounding it that she went on for depression.

    It is humilating, they control your life, you never have enough—but you at least have a chance to get food you like for some of hte month. Homeless shelters serve poison and are full of chemicals everywhere.

    Don’t give up- It is bad, yes, but it’s better than some other situations.

    Reply to this comment

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