What You Should
Know About My Life
With Autoimmune
Disease
A Personal Letter to Friends and Family
Copyright 2006 Kathy Browning
My disease is real. It is one of the least understood and least
researched diseases in the world, yet it affects over 20% of the U.S. population.
My pain is not well understood, but it is real too. It travels throughout
my body and rears its ugly head on a regular basis. Sometimes it's in my shoulder or knee. Other times if feels as if little
men are inside my body, squeezing the air out of my lungs, leaving me breathless and fatigued. At times it hurts to blink.
My chronic fatigue does not mean that I am merely tired. It means
that I am in a constant state of exhaustion. I know it is frustrating when I tell you that I cannot participate in the physical
activities we used to enjoy together. I know it is disappointing that we can no longer go to the mall and shop 'till we drop
or spend hours working in the yard. Please don't take it personally. I miss being able to do these things too.
My forgetfulness has nothing to do with my age. It's always a cloudy
day inside my head and I feel as if my brain is on vacation in Seattle.
I'm always trying to remember what I'm doing and what I've told
others I'll do for them. I may not remember what I've promised to do for you, even though you just told me seconds ago. This
has nothing to do with selective memory. It is a by-product of the sleep deprivation caused by my chronic pain.
My depression isn't a reflection of how I feel about you. Yes, there
are days when I would rather stay in bed or in the house. There are days when I have prayed for God to take me now. This doesn't
mean I don't love you or don't want to spend time with you. It simply means, the chronic pain and lack of sleep have pushed
me to the edge.
When my brain chemicals stop wreaking havoc on my body, I will return
to my normal cheerful self. Your compassion and understanding will help me climb out of the dark hole. Your rude comments
can push me further down it.
My body doesn't do well with stress. General, every day stress can
send me into a complete melt-down. This doesn't mean I am a "basket case" and need to be placed on sedatives. It means I have
to avoid stressful situations. Please don't get angry with me when I tell you I cannot help you with your personal stress.
I can barely manage my own.
My lack of appetite is no reflection on your cooking abilities.
My body no longer works the way it should and my ability to control my appetite is broken.
Just because I "eat like a bird" doesn't mean I don't like your
food. When I refuse to eat the beautiful red meat you have so graciously grilled, please do not take offense. Red meat causes
inflammation within my body, which leads to all the symptoms above. When I bring my own food to your event, it isn't intended
to offend you. I simply cannot eat the way other's can.
Please do not label me as lazy. Just because I work from home, does
not make me lazy. My disease does not allow me the luxury of living life like a normal person. I have had to create a new
career so I can work around my disease. Your remarks of "it must be nice to sit around and do nothing all day" are very hurtful.
Until you have walked (or crawled) in my shoes, do not pass judgment. I would gladly work a 40 hour week at a normal job,
if it meant I would be able to live pain-free.
Please do not call me indulgent because I get a massage every week.
My body is filled with knots. My muscles constantly cramp up and leave every inch of my body in pain. My weekly visits are
far from a day at the spa and generally leave me feeling exhausted and beat up. If I can stand the pain, massage therapy can
help me to temporarily release it.
Just because I have good days doesn't mean I am cured. I suffer
from a disease that has no cure. When I experience pain-free days, I am hopeful. Hopeful that someday I can return to a normal
life. Hopeful that I can have more pain-free days. Hopeful that soon they will find a cure.
