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13 September 2011

Shedding Light on Invisible Chronic Illness

This week is National Invisible Chronic Illness Awareness Week where all of us with chronic illnesses and those who do not shine a spotlight on the epidemic of having an invisible chronic illness and to be uplifting advocates for so many without a voice.  It's an unfortunate reality that so many people go unnoticed or are ignored and forced to suffer in silence just because they "appear" healthy.  The stigma that so many are dealing with can undoubtedly be overwhelming.  The theme for this year is "DEEP BREATH, FRESH START".  Reminding us to take care of ourselves in healthy ways and how to add more joy and sunshine into our lives.

My personal connection with invisible chronic illness is my battle with chronic daily migraine, depression and anxiety.  On the exterior I look great; healthy and doing well.  Yet, inside I am suffering on so many levels experiencing different types of pain be it mental, emotional and/or physical.  For 25 years I have lived with the stigma of migraine and having my illness reduced to just a simple headache when in fact migraines are very different from headaches.  Migraine is a genetic neurological disease, characterized by episodes often called Migraine attacks where the blood vessels that are located within the brain constrict or dilate.  The main pathways to get important fluids to the brain are either getting larger or smaller causing extreme pain due to the inflammation that is occurring.  Often, migraine is described as pulsating pain because that is exactly what it is.  Blood vessels are rubbing against different parts of the brain causing indescribable pain.

Typical migraineurs experience two to four migraines a month.  In my case, I have 15 or more a month for at least three months (a year now for myself), thus classifying me as having chronic migraine.  The causes of chronic migraine are classified as such according to MayoClinic.com:
  • You develop a heightened response to pain signals
  • The part of your brain that suppresses pain signals isn't working properly
Various factors can increase the risk of developing frequent headaches including:
  • Anxiety
  • Depression
  • Sleep disturbances
  • Obesity
  • Snoring
  • Overuse of caffeine
  • Overuse of pain medications
  • Regular use of positions that cause strain on the head or neck
Coping with this kind of pain is a very difficult task, especially when you throw in bouts of depression and anxiety both of which are comorbid with migraine.  I have had many challenges in learning how to cope with it all.  I even attempted suicide in 2004 because the burden of pain and emotional distress was too much for me to continue battling.  Thankfully, I survived but had to spend three days in the ICU because the drug that I chose to end my life with and the amount that I took (almost a full bottle) causes such severe and quick damage to the brain and heart that I had to be monitored closely to make sure that all of it was removed from my system.  It was an eye-opening experience where I learned that I had to live for my three children.  They were the reason that I decided to call my husband and tell him what I had done.  They were the reason that I'm here today.  And it's still because of them that I continue to push through day after day of pain.  God spoke to me that night and said to me, "You have three babies downstairs."  That voice was so loud and clear and distinctly not mine.  I knew it was Him telling me to live for them.  So I did.

So I'm here to encourage all of you to live.  There can be joyous moments in between the pain.  Chronic invisible illness does not have to be the end all be all of your existence.  I understand how frustrating it is to feel ignored and mistreated and spoken to as if you are imagining your very real pain.  The many doctor appointments, prescriptions and failed treatments can all bring a a failed sense of hope.  Remember that you are never alone.  And people like myself are here to help.  There are so many resources available for healthy ways to learn how to cope with your illness and where to find help when you need it.  Let's all work together to make invisible chronic illness something that is impossible to ignore.

Online Resources:
Invisible Illness Week
Migraine.com
National Patient Advocate Foundation

2 comments :

  1. I just had to say thank you for sharing your words with the world. Reading your second paragraph, I felt that SOMEONE had FINALLY found the perfect way to explain to non-chronic migraine people what exactly we are going through, and our illness is valid. Thank you for that!!

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  2. I'm so humbled by that Kim...thank you. It's very important for me to get those who don't suffer from migraine or a friend or family of a sufferer to understand the severity of our pain. Way too many of us suffer in silence, invisible to those around us because our external appearances disguise it and our illness is under-treated and over-stigmatized. Hopefully this will come across to more people so that they truly understand!

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