Tuesday, January 18, 2011

What I Have and Why I Write

     I have had many ailments throughout my life.  Everything from the common childhood diseases of my day--Red Measles and Mumps--to Hepatitis (not C).  It never occurred to me until I began working my first job that other people did not get ill frequently.  It's always just been a part of my life.
     I currently entertain a myriad of illnesses.  Nearly all are "invisible".  Nearly all have a stigma attached to them.  Chronic Depression has lived with me for as long as I can remember.  My first memory of not wanting to walk among the living is from around age 10 or 11.  Of course, in 1971, depression was not openly recognized, and certainly not something children suffered from!  Thankfully, through intensive therapy, and the introduction of medication, I was able to grab a hold of my life.  It was a weak hold at first, but with practice has gotten much stronger.
     I am also Bi-Polar.  This disease exists on a sliding scale, having varied degrees of severity, or variants.  I am fortunate to be on the lower end of the scale.  The governing symptom, for me, is depression, but racing thoughts invade my head--particularly at night--keeping me awake all night.  Yes, all night, without medication.
     My depression runs in the family.  My father, mother, and sister have all suffered, as have scores of cousins.  The home environment suffered, as a result, lending spark to the illnesses.  The biggest law in a dysfunctional home is the look of normalcy.  Therefore, no one ever knew.  No one could help.  I am so proud that I took the steps and did the very hard work of therapy, and have been willing to be a bit of a guinea pig with regard to my medications.  But, the stigma remains.
     My biggest battles theses days are with Fibromyalgia and Chronic Fatigue Syndrome.  It was theorized by a prominent Infectious Diseases doctor that my Chronic Fatigue was launched as a result of the Hepatitis I contracted (as a result of Mono gone wild). The theory was that as a result of such a serious (life-threatening) disease, my immune system went into overdrive to kick it.  However, the signals got mixed somewhere in the fight and it forgot to stop fighting.  So, everyday, needed or not, my immune system fights.  Eventually, they fight my own...system!  This is an exhausting process for the body.  Think about how worn out you feel after you've just beaten a nasty flu.  You are glad to not be at the mercy of your bathroom, but, at the same time you are just whipped.  That is CFIDS everyday.  Fibromyalgia is like mutant CFIDS.  All the fatigue, and compromised memory, IBS, dizziness, blood sugar drops, sore throat, swollen lymph nodes, numbness and tingling, headaches, sleeplessness...an endless list of symptoms...and pain.  So much pain.  We have a general list of things that could help, but what works for one, does not necessarily work for the next in line.  And the line is long.
     You probably know someone or of someone that has Fibromyalgia.  You've probably looked at them and wondered, "How bad could it be? They look great!".  I hope you've never said it out loud.  One of the battles we fight--aside from the above listed--is others' disbelief that our disease is real.  We've been called lazy, liars, fakers and wimps, to name a few terms.  Fibromyalgia has one of the highest suicide rates.  And this is as much for lack of compassion as it is for physical pain.When your family talks about you negatively behind your back because they don't believe you, why go on?  Shouldn't the people that are supposed to love you unconditionally be the ones that stand tallest behind you?  Somewhere along the line we've been programmed to not believe what we can not see.  I hope this frame of mind is discarded soon.
     And, that is Why I Write.  I post how I feel on particularly bad days.  I don't do it to gain pity or whine.  I do it to make these diseases real.  Someone you know may be suffering from something you can't see.  The "invisible" diseases include more than just Mental Illness, CFIDS and Fibromyalgia.  Included are Myalgic Encephalomyelitis (ME), Epstein Barr Syndrome, and Lupus.  The are many others...many.
   It occurs to me, as I write the final paragraph, that perhaps these diseases should not be invisible to those who live with the sufferer.  Look more closely.  There will be a wince as we get up, or a foot shuffling as we walk because we are too tired to lift them.  There will be rubbing of shoulders and irritability from fatigue.  See it.  Do not deny it because "we all get tired", or you think we should "buck up".  These diseases are as real as a broken arm, heart disease, and cancer.  Recognize the reality of the diseases and support the ones you love.  We will love you for it, and it may even help the pain!

2 comments:

  1. Through you, my eyes have been opened. Thanks for sharing with all of us the health problems you endure.

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  2. I write to feel real. to feel like my voice is out there. I "only" have CFIDS and depression . . . I am alone most of the time because there's no energy to go anywhere or do anything.
    So, I write so I'm sort of "out there"
    And I write positive things, even though I don't feel that way, to create a bit of a place to escape to in my mind . . . in order to not be trapped in the depression.
    I work to remind myself that there is light and hope and goodness.
    Thank you for your encouraging and brave example.

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