Coping with MCS as a Chronic Illness

[Guest guest]

Coping with MCS as a Chronic Ilness

lness

by _Pamela Reed Gibson, Ph.D._

(http://www.needs.com/prod_detail_list/bk_Pamela_Reed_Gibson_PhD)

_http://www.needs.com/product/NDNL-0611-01/a_Anti-Inflammatory_Pain_

(http://www.needs.com/product/NDNL-0611-01/a_Anti-Inflammatory_Pain)

 

People debate whether MCS is an illness, a disability, or an injury. I

believe it's all three. The goal of living with chronic illness is to refashion

life to accommodate, yet not be defined or overwhelmed by, the illness. In any

state of ill-health, there are challenges with work, finances, relationships,

health care, identity, and access. But for those with MCS, these challenges

are magnified in almost, if not all, of these arenas. Research shows that

active coping skill models are healthier than passive or avoidant ones, so

having

a plan for how to address your MCS challenges is recommended if you are to

manage your condition rather than have it manage you.

 

Although step models can seem oversimplifying, they can also be successful

strategies if viewed and used realistically. So I offer a basic strategy for

facing MCS, making the hard decisions, and taking control of your life despite

a disabling condition.

 

STEP 1: MAKE A CLEAN LIVING SPACE

 

Over 95% of those with sensitivities can be helped simply by avoiding

chemicals. It's crucial to leave an unsafe home if problems cannot be

rectified, as

your sensitivities will spread if you are continually exposed to your

triggers. At minimum, remove harmful petrochemicals, molds, chemical cleaners,

pesticides, furniture that off-gases, and chemical-laden personal care

products.

Find safe sources of these items, including bedding and clothing, which are

now easier to obtain and often work better than conventional products. An air

cleaner may be necessary; however, they are designed for cleaning small,

unpreventable exposures, rather than larger-scale problems.

 

STEP 2: MODIFY THE WORK ENVIRONMENT

 

If you are still working, you will want to negotiate for accommodations that

preserve your health and allow you to continue employment. Many

modifications are not difficult and can be requested under section 504 of the

Educational

Act and the Americans with Disabilities Act. Safer cleaners, air fresheners,

and pest control; location near an open window; and a fragrance-free policy

are not expensive nor difficult for the workplace to provide. Other options

include working " off " hours, partially from home, and/or moving your office.

If your workplace is resistant, you may have to decide between taking legal

action and finding alternative employment.

 

STEP 3: ASSESS YOUR FINANCES

 

You will have to regroup and create a financial plan to accommodate a

condition that may limit your earning potential. If you are capable of working,

you

have more flexibility, but do consider that this option may decline in the

future. If you cannot work and need money, think about applying for Social

Security disability compensation—in itself, a challenging task. We studied

100

persons with MCS who applied for disability and found on average it took 23

months to obtain and generally yielded insufficient awards. Chapter 13 of my

book details instructions and resources for applying for disability in a

competitive and cynical system.

 

STEP 4: ACCESS APPROPRIATE NUTRITION AND MEDICAL CARE

 

Your finances will partially determine the medical options for you. Taking

responsibility at the onset of your condition will save you the time, money,

and the heartache of seeing numerous disinterested physicians. I suggest

considerable selfeducation before you choose a provider. Read both lay and

professional writings about sensitivities, listen to what others with MCS say,

and

then decide where and how you want to get help. View some of the experiences

of 917 people who tried numerous treatments for MCS in our 2003 study

available at ehponline.org.

 

You can improve your condition considerably just by modifying your diet.

Test your nutrient levels to determine any deficiencies. In addition to treating

MCS, you may need to address other medical conditions that may or may not be

related to the MCS. There are many layperson medical books that can help with

conditions from chronic pain to diabetes. I also recommend The Peoples'

Pharmacy, a weekly radio program out of University of North Carolina, where

health conditions are discussed and experts interviewed in a variety of health

fields (peoplespharmacy.org).

 

STEP 5: TAKE STOCK OF RELATIONSHIPS

 

Social support is crucial for everyone, particularly for those with chronic

illness. MCS sufferers tend to be further challenged given that our culture

rests upon the chemical industry and distrusts " emerging illness " conditions.

If you have a supportive significant other, discuss with this person how you

will restructure your time, tasks, and interactions in order to avoid your

illness triggers. It is virtually impossible to re-construct your life in a

positive way with someone working against you. Seek education or partner

counseling from a savvy therapist. The cold truth is either they get it or they

don't.

 

If you are " alone, " you have neither the hassles nor the support of a

permanent partner, and you will end up having to do more for yourself. Children

will need educating and must realize that it is unacceptable to " disbelieve "

you're ill, to bring home fragranced friends, or otherwise ignore your needs.

Any refusal to make modifications may warrant a review of where the power is in

the parent-child relationship, and a call for the need of change in the

dynamic. A " friend " assessment may also be needed: who can be supportive, who

can

be educated, and who will never get it.Moving away from those who can't

support you will make room for those who can. Sometimes new support and friends

can be found in area MCS support groups with others who understand

sensitivities.

 

STEP 6: LOCATING ACCESS TO COMMUNITY

 

It will be necessary to identify which community resources (i.e., libraries,

stores, medical offices, restaurants, and professional offices) you can

access and meet your basic needs. You may only have access to an establishment

during the summer, due to petrochemical heating in winter.You may need to make

special arrangements if any are truly inaccessible, for example, making

numerous phone calls to learn if and what pesticides, heat sources, etc., they

are

using, or asking someone to go to the health food store for you. You may

even need to be proactive about creating a network for you and others like you

so that you have access to the community services that non-MCS sufferers do.

 

STEP 7: TAKE STOCK OF YOUR IDENTITY

 

Who you are is bound to change as a result of developing a disabling

condition. You may lose both smaller (hobbies and pastimes) as well as very

large

aspects (work or partner identity) of your life. The shake-up to your identity

can be substantial. Taking stock of what is still intact and what was given

up can be helpful. Our study of those with MCS and identity changes revealed

that not all the changes are bad. Although people mourned the loss of work,

conventional beauty, and other self-constructions, they found value in the

growth of learning who their true friends were, developing new abilities,

becoming environmental advocates, and deepening their spirituality. There is no

easy

or quick path to development through MCS, but people did grow tremendously,

becoming what Goodheart and Lansing call " phoenixes " rising from the ashes of

chronic illness.

 

Though it may not be as magical a journey as Dorothy's Oz, you can start

with basic building blocks for a viable life with a condition not yet accepted

by industrial culture. You can begin today by putting practical changes in

place that will be the foundation of an unusual, yet productive life.