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Part 2. Treating People With Chronic Illness Like They’re ‘Faking It’ Is Really Harmful
2. Treating People With Chronic
Illness Like They’re ‘Faking It’ Is Really Harmful
That’s not a hyperbole.
My misdiagnosis with Bipolar Disorder
resulted in my being medicated with a substance I was highly allergic to. I
ended up having seizures after the first dose. It scared me so much that I
didn’t seek any sort of treatment for a couple more years.
Meanwhile, my endometriosis got worse, eventually leaving me unable to
attend classes or work. I was bedridden, without the energy to fight for my
place in college, and unable to explain to any of the administration why I was
Without the understanding of how my health affected my ability to
attend, I had no recourse or strength to fight back when they decided to end my
time at college. Rather than working with me on a solution, I ended up with a
mountain of debt, no degree, and no income.
Many people with
chronic illnesses are given options that are difficult, irrelevant, or
downright impossible for us.
Our actual capabilities aren’t taken into account. And people figure,
if healthier people can do it, we should be able to.
But for those of us with invisible illnesses, being treated
appropriately can mean the difference between life and death. Some of us are
given the wrong medical care (or worse, unsympathetic care).
This lack of acknowledgement occurs in many ways. People don’t think
you really need that handicapped seat on the bus. They report you for having a
handicapped sticker when clearly you can walk. They fire you from your job
because they’ve never heard of your illness.
Many of us are accused of faking our illnesses when we need to ask for
certain things: like asking that places be fragrance-free, needing to leave a
loud party, or needing to take three naps in one day.
People tend to try to help when we don’t actually need it and then
fail to offer assistance when we really need it. Paying attention, learning
about illnesses, and listening to our experiences goes a long way to ensuring
we can get the help we need.
Each chronic illness manifests in different ways. Sometimes we’re
capable of certain things and other times we’re not. Checking in with us at
each step along the way – for any activity – is best. Doing your own research
on our conditions will give you a better understanding of our needs. It’ll also
help us to save our spoons for getting through our day.
In many cases,
it’s healthier for us not to
push through our pain. It’s better not to
force ourselves into uncomfortable situations.
And it certainly won’t help anything to add on stress (no matter how little)
to our day.
In the end, it’s better not to make assumptions that make our
days and lives harder.
Q & A WITH PORPHYRIA EXPERT, DR. BRUCE
WANG, UCSF The APF asked our Facebook friends for their top questions they
would ask a porphyria expert.
The following questions were submitted
to Dr. Wang for his responses ...
Q. Does EPP give us bad teeth? Also, do people with EPP
get stomach pains or is that with the other porphyias?
A. The porphyrin that accumulates in EPP patients is protoporphyrin
IX, which does not cause discoloration to teeth or abdominal pain.
The type of porphyria that leads to discolored teeth is Congenital
Erythropoietic Protoporphyria. The porphyrias that lead to episodic
abdominal pain attacks are the acute hepatic porphyrias.
Q. I have EPP and I have a severe reaction on my hands
and lips. Do I seek urgent care? Also, what can you even do
when you burn your lips?
A. The acute reactions to sunlight in EPP can be very severe and,
unfortunately, there are not many effective options to treat the
symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as