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Part 1 Chronic Illness Has Unexpected, Horrible Side Effects
1. Chronic Illness Has Unexpected,
Horrible Side Effects
Unlike popular medical shows like House, many
people with an invisible illness can actually have more than one. It’s like
winning the world’s worst lottery.
The first illness I was diagnosed with was endometriosis. Then the
doctors realized I had PCOS (polycystic ovarian syndrome). Then – due to my
stressful life circumstances, my traumatic history of sexual and emotional
abuse, my intense work schedule, and the fact that my body was so used to being in pain – one day I woke up in
an immense amount of pain that simply never went away.
Fibromyalgia: the nervous system literally operates on 100%,
constantly engaging the flight or fight response until all it can do is turn on
itself, electrocuting you from the inside, causing body-wide muscle aches,
disrupting your temperature, making all of your senses even more sensitive, and
leading to chronic fatigue and brain fog.
That’s not all it does; that’s just the beginning.
Yet this is the
actual slippery slope of chronic illness. If you have one already, you’re more
likely to develop others.
I didn’t just develop full-blown fibromyalgia; I also
found myself depressed and anxious from dealing with each of my physical
illnesses and painful history. My PCOS alters my hormone levels, which leads to
cyclic depression that matches my menstruation. Add that to the PMDD, and you
have my very many suicide attempts.
Pregnancy and menstruation are dangerous for me in
ways most people don’t realize. When I’m unable to receive the care I need and
when others belittle or don’t understand what I’m going through, it can lead to
isolation, depression, and anxiety.
All of my symptoms worsen when life circumstances are also stressful.
In societies where simplicity is an ideal, the complexities of living with a
chronic illness that no one else can see can make life that much harder.
Sometimes, it can even lead to death.
When you don’t realize that it’s never just one thing affecting our
health, but everything, then you can better understand our fatigue, our depression,
why we say we can’t do certain things.
You’ll understand that pressuring us about work, education, or other
“normal” activities only adds to our stress, which makes every part of our
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