the Independent Physician
for Disability Evaluation
Many people with Environmental Illness end up having to apply for
disability, either through Social Security or some form of private or state
plan through a workplace. This is a
long process that takes months and even years.
Mine took 18 months, which seems typical, though I know several people
who had to fight for years. Start
early, you can always cancel if you don't need it, but don't start while still
One of the most important steps in the process is the evaluation by a
physician, who is hired by the agency considering the case. Some of these physicians are exclusively
doing this type of evaluation, while others see their own patients as
well. These physicians can be hired
directly by Social Security or through private agencies which provide experts
for court cases, insurance claims, etc.
It is important to realize that this step in the disability process is very
unlike consulting a physician for medical care, and is adversarial in
nature. The chosen physician has never
met the applicant before, and is usually not working directly for the agency
considering the case. They are therefore
considered objective, though they are not fully so, as they are paid by one
side of the dispute.
The physician is expected to find reasons to deny the claim. Some see it as their responsibility to try
to expose malingering, even by trying to trap the applicant with their
The object of this meeting is, for the applicant, to convince this
physician that it is not possible to work.
The opinion of this physician has more weight with the agency than the
support of several physicians who actually know the patient, and the agency is
very likely to deny the claim if "their" physician does not support
it. Even if their own physician
supports the case, the agency may still deny it.(1)
It is "safer" for a physician to say a patient's health is pretty
much fine, with no significant objective signs of disability, than to stick her
neck out to support a controversial diagnosis and recommend disability. One physician I went to was clearly weighing
this when he asked at what stage I was in the process — whether this was the
first round or the appeal case. Since
denial of the initial application is pretty much standard, his support there
would not make much difference anyway.
As there are no objective ways to prove the existence of MCS or Electro
Sensitivity, most physicians still do not believe they exist, and that makes it
extra hard for them to be supportive.
Most of the doctors are of course very professional, though of the four
doctors I was sent to, one stared at me stone-faced the entire time, while
another actually sneered at me when he saw that my primary physician is a
well-known physician in environmental medicine.
Each physician works differently, so one never knows what to expect. One I was sent to does treat some people
with MCS. The agency finally sent me to
him when I complained in my appeal case that I had yet to be seen by a
physician who was competent in the field of Environmental Illness. I expected to be well received, but he
basically lectured me for 90 minutes about largely irrelevant topics,
interspersed with shallow questions to which he would only allow me very brief
replies. He even asked a lewd question
regarding my sex life during college!
To top it off, he wanted me to come back as his patient. Abuse of power comes in many packages.
The other doctors the agency sent me to were nicer, though they too control
the conversation and leave little room for bringing up things they would not
think about — which is basically most of the types of problems and issues that
prevents an EI from working.
The specialty of the physician is very important and is decided by the
agency. An allergist is a common
choice, and is unlikely to be supportive when meeting a patient who talks about
Environmental Illness, the very existence of which seems anathema to most
allergists, though certainly not all.
Another common choice is a psychiatrist, and many of us end up with some
sort of psychiatric label. Since MCS
and EHS are unproveable and lack acceptance, it may not be on the agency's
"list of approved disabling disorders". If no other label is usable, a psychiatric diagnosis may be the
only possible way to get through the system, however uncomfortable that may
The good thing about psychiatric diagnoses are that they are not
objective. There are no blood tests
that can show anything as proof, so the psychiatrist often has greater
flexibility than other types of physicians.
All physicians are restricted to practice their own field. They can be censored, or even prosecuted, if
they go too much outside their own field of expertise. This does not restrict an allergist from
suggesting in her report that the patient should be sent to see a psychiatrist,
or that her impression is that the problem is psychosomatic; but only a
psychiatrist can actually make such a diagnosis. Likewise, a psychiatrist cannot say that a patient is disabled
with MCS or any other condition outside their field.
When mounting an appeal or court case, the choice of specialty of the
evaluating physician could perhaps be used as an argument.
Doctors are trained to exude confidence.
It's a necessary part of a professional job where people pay good money
for the professional's opinions and expertise.
A professional who is not sure of herself will soon lose business. Patients have to believe in the pill they
are given, or they may not take it; and even if they do take it, it may not be
as effective as when they had faith in it.
However, this necessary confidence can become sheer arrogance in some
individuals. The medical field has a
lot of internal politics: doctors in
one field consider themselves a little "better" than those practicing
in other fields, for instance(2). We as
patients can be caught in this when we show up and by our very presence
question that the earth is flat and that it may not be the center of the
universe after all. That is very
threatening, and the response can be very human. Medicine has put its collective head in the sand over many
"new" things before, when it threatened the comfortable status quo,
whether it was the existence of germs, Lyme disease, Multiple Sclerosis or AIDS(3--7).
Then what sort of approach to take when actually sitting in the hot seat,
probably not feeling too well in a regular office, and faced with a person who
has a great deal of power to influence your near future? I think it's the same as for a job interview
or a first date: be yourself.
A physician will especially be looking for any sort of malingering, and if
any is found, the case is likely to be closed immediately. It is tempting to "pad" the
responses a bit, as surely the physician expects some of that and thus
subtracts from the answers, but it is hard to do that consistently and any
inconsistencies could cause problems.
If the physician uses any sort of test, like memory tests, it is tempting
to pretend things are worse than they are.
It is very hard to do that fully consistently on such tests, and even
people with serious brain damage can get quite a number of these types of tests
correct, and the physician will be well aware of that(8). Malingering is a slippery road, that should
be quite unnecessary.
It is important to be honest emotionally, too. If anger or tears come easily, let it show. Emotional instability may help the case, if
some sort of psychological disorder is being considered.
I think it is very important to show an interest and willingness to come
back to work. I do that by talking
positively about my former job and career (which I very much liked), and the
frustration from having been sidelined in life. People who wish to achieve things are less likely to be
I do wear a mask in the doctor's office, even though the effects of a
normal office might provide more evidence to support the case. I have found that physicians do not notice
the effect on me, which is that my thoughts become cloudy, I clam up and just
give short replies without elaborating with important details. For people with more obvious responses, it
may be a good idea to go unmasked, but this should be considered very carefully
in advance. I did sense that two of the
physicians were a bit uncomfortable with my mask, though neither said anything
Even with the psychiatrists, who are trained listeners, I left a lot
unsaid. It is difficult to think of
everything in such a situation, especially if the air quality is not pristine. As an aid, I bring along a list of
"talking points" — a one-page list of issues to cover during the
causes and duration
I used to do
and situations that are a particular challenge
As I often can't even remember all the symptoms I may get from various
things, I make a short list for the different items, so it can serve as a handy
The person on the other side of this conversation is very unlikely to
understand what impact our sensitivities have on our ability to work — just see
how difficult it is for people who know us well — so it is imperative to paint
a picture of the difficulties, to make it at least a little
understandable. Even if the physician thinks
it is all psychosomatic, she may at least realize that life is very difficult.
Gaining this basic understanding is very hard to achieve, even in the best
of circumstances. To further educate
the physician in a more comprehensive manner, I started giving the physician
the most important information in writing, so she would have it even if I
wasn't allowed to say a word during the meeting. Each time I added more details, so it became several pages, each
covering a specific subject, such as a list of symptoms or "daily
challenges" with a paragraph about each issue that affects my daily
routine. Another sheet details my
housing situation and yet another tells the story of the last six months of my
work life, as well as some information about my professional career.
I included a personal letter stating that I know there would not be time to
cover all these issues during our meeting, and pointing out that even though
this diagnosis is controversial, so were AIDS, MS, Lyme Disease and Asbestosis
until recently. Nice and
non-confrontational. I once even
included the housing-ads page of Our
Toxic Times, to make the point that I am not alone.
I also make sure to include a full set of the lab work done by various
doctors. Mistakes do happen at the
agency, and I found out that they did not supply the psychiatrists with the
non-psych lab reports.
I give the physician all the materials at the end of the session. One big envelope for the lab reports, one
for letters from doctors, another for my letters, etc. It is important to make it easy to look at.
A friend pointed out that being "too clever" could have
backfired, with the logic that if I could produce this material, then I must be
quite functional. I counteracted that
by dating each page, so it was obvious they were written over a year.
A comment in one of the physician's reports was that he considered the
volume of the material to indicate how much I had "bought in" to this
It is the policy of my agency that they will release the reports they get
back from their physicians, but only to my own physician or attorney. Getting this feedback can be very
informative and helpful when appealing a denial. It can also be rather amazing and disturbing to read these
people's impressions. I used this
feedback to improve the set of materials I supplied to the next physician, such
as explaining what a "booth test" is, though I doubt a physician will
have much faith in what a lay person says.
The reports told me that the neuropsychiatric test I had done in Dallas was
very valuable, as nobody really called it "subjective" or
"unscientific" (or whatever wording they use to dismiss most things
with). This test measures how well the
memory and various cognitive skills are working.
It was interesting to see how the physicians interpreted the lab work,
which varied widely and included deceptions, omissions, cluelessness and even a
few outright lies. They generally only
commented on reports from their own field.
The letters from supporting physicians that I provided were dutifully noted
by all physicians, so they do seem helpful as well. It may be well worth it to invest in going a few times to a
physician and do some lab work there, before asking for a letter. Some are not willing to provide one, since
it takes a lot of time and is poorly paid.
They may also be sticking their neck out a bit, so many are reluctant to
do it even for long-term patients.
In addition to the lab reports, the letters from supporting physicians and
my own statements, I also give the physicians educational materials. The booklet "Multiple Chemical
Sensitivity"(9) is an excellent concise description, by a physician,
so it carries some weight. I also
include a few selected medical articles, most of which are obtainable through
CIIN. I doubt that they will take the
time to read all this, but some of it may catch their interest.
The physician is very unlikely to agree to any special accommodations, such
as meeting outside the building or not wearing smelly clothes. I even tried with a letter from my doctor,
which was flatly denied, using the reasoning that if I could go in the first
doctor's office, I could also go in the next one's.
The independent evaluation is a difficult step in the disability
process. It is not intended to be easy,
perhaps not even fair, and the best preparations do not assure success. To me, it seems more like a lottery than the
scientific evaluation it claims to be, but a little preparation can improve the
odds. I found it worth the effort.
And when we finally make it through the whole process, we get to meet these
physicians again at the periodic reevaluations. At the start, they'll happen every couple of years (one to three
years is typical); later, less frequently.
These reevaluations are easier, since the physician now just needs to
confirm what other doctors have said.
The author has been
evaluated and reevaluated by seven different physicians.
Vlantis vs. Kenneth Apfel, Commissioner of Social Security, United States
District Court for the District of Connecticut, Sept. 22, 2000. (CIIN: 0147-SSCT-00-027)
Klass, M.D., A Not Entirely Benign Procedure, Penguin Books, 1987
Trachtman: Hero for Our Time,
Smithsonian Magazine, Jan. 2002
McCampbell, M.D., Multiple Chemical Sensitivities Under Siege, Townsend Letter
for Doctors and Patients, Jan. 2001
O. Becker and Cary Selden, The Body Electric, Quill, 1985
Shiltz, And the Band Played On – Politics, People and the AIDS Epidemic, St.
Martin's Press, 1987
P. Lawrence, M.D., FCCP, Asthma . . . What Everyone Needs to Know, Our Town
Magazine, Feb. 2003
Trowbridge, PhD., JD, Malingering Exposed, The Trowbridge Foundation
McCampbell, M.D., Multiple Chemical Sensitivity, 1998. Send $4 per booklet (discount for 10 or
more) to Ann McCampbell, M.D., 11 Esquile Road, Santa Fe, NM 87508. Make check payable to "Ann McCampbell,