“I wouldn’t worry, I think you’ll get better.”
This is what the disability lawyer told me as I sat across
from his desk, shuddering uncontrollably from the effort of sitting up for an
hour.
What I should have said was, “Oh really? What exactly makes you think that? Tell me why, after 15 years of being ill and
no available treatment for my disease, you believe I will magically just get
better. What exactly do you think will
change?“
That is what I should have said. But I didn’t.
I stayed quiet. I did look
disapprovingly at him – but that is the best I could do.
Honestly, I have just spent an hour outlining the crippling
effects this illness has on me. I have
told him how long I have had it. I have
explained what my doctors say. I have
shown him my personal activity log (though he did not look at it – in fact not
one person in the medical or legal or disability field has looked at it). And now, after all of that, it becomes clear
that he does not believe me. He didn’t
believe me from the very beginning.
He
didn’t believe me because I am too articulate, too intelligent (his words not
mine – though obviously he didn’t get a real handle on me in that hour), too
respectable looking, and – here is the kicker – I am only 29 years old. I am too young, too smart, and too well
dressed to be sick. So I will just get
better.
Funnily enough the doctor said the same thing as the lawyer.
First he made it clear that he didn’t think my illness
existed (whilst at the same time scaring the pants off me by telling me I would
die if I didn’t get help for my heart problem immediately. I’m sorry, why do you think I am here? I am seeking help. I have been seeking help for a long time. )
Then he berated me, implying that my illness was my
fault. Then he told me I had wasted my
whole life malingering. Then he said, “I
think you’ll get better.” He didn’t
offer any suggestions on how to make this happen.
As you can probably tell, these encounters made me
angry. They also made me sad and
humiliated and mortified and insecure for a while. But this is what I have learned from them:
Create a team made up
only of people who believe you
Whether you are trying for disability and need an advocate
or a lawyer, or you are seeking medical help and need doctors, natural
practitioners, specialists – whatever
you are seeking, the team you compile must believe you first. It is the first requirement.
They must also be competent and educated and offer some kind
of help. But first and foremost, before
anything else, they must believe you.
If they do not believe you they will not be able to help
you.
If they do not believe you they WILL NOT BE ABLE TO HELP
YOU. Rather, they will cause you
physical and emotional harm.
After many unhappy experiences like the above I finally did
some online research to find doctors who deal specifically with my
illness. My philosophy was that if they
deal regularly with my illness, they must
believe that it exists. So that
is one hurdle over with. (You should be
prepared to travel if you do not live in a big city.)
From this research (and with some help from my family) I did find a medical doctor who not only
believed me but listens and works hard for me.
She is competent and equipped.
Her whole office is set up to prove that she believes you – from the
questions on the new patient forms to the length of the first interview. She deals primarily in autoimmune
diseases. (I travel 2 hours one way to
get to her office. It is worth it.)
I also work with a natural practitioner and she is the one
that helps me the most. She is also
competent and educated and listens and works hard. And she believes me.
If your Doctor does not believe you, get a new doctor. The same goes for your lawyer. How can they fight for you if they do not
even believe you?
That is what I have learned.
I have read so many stories of people who go to doctors that constantly
undermine and belittle them, that do not believe they are really sick. And these people receive no help from these
doctors. Yet they keep going.
Don’t do this to yourself.
You are the first person on your team.
You must be the first person who believes you, who works for you, who
listens to you. Find others who can do
the same.
How to know whether
they believe you
They both said they believed me at first. But that wasn't proved true by the rest of their words.
Listen to what they are actually saying. All of it.
Some will say it right out.
Some are more subtle. But if you
listen to what they are actually saying, you will know what they really think.
Entering the medical or legal sphere is scary. Doctors can be scary. Nurses can be scary. Lawyers can be scary. But not all of them are the same. You will be able to find a team that believes
in you. You will be able to find a team
that has something to offer.
And now it’s your turn.
Have you found professionals who believe and help you? If so, how did you find them?
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Awesome post!
ReplyDeleteI just discovered your blog and find it very helpful. I see you have not posted in a while and hope you are doing ok. This post in particular really resonates with me. I totally understand what you are saying about how they treat you. At 32 I still get this from many people but when I was in my 20s it was a lot worse. Because as you know its 'impossible' to be ill unless you are old and in your p.j.'s. Wishing you the best.
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