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Letter to Family and Friends from a Sjogren's Syndrome Sufferer

Updated on December 30, 2011

Looks Can Be Deceiving!

Dear Family and Friends,


Please excuse my Sjogrens….I may “look” okay some days but behind my smile you have no idea what battles are being waged. Every day is a crap shoot and I never know, from day to day, how the Sjogrens dice will fall.

  • · Will today be the day my eyes are so gritty I can’t see to drive?
  • · Will today be the day my mouth is so dry my tongue sticks to the roof of my mouth and it’s an effort to talk?
  • · Will today be the day my ears feel like they are going to implode and just hearing any type of noise is unnerving?
  • · Will today be the day I have to cancel plans with a friend because I don’t have the strength to leave the house?
  • · Will today be the day the glands in my neck are so swollen and heavy – it’s an effort to hold my head up?
  • · Will today be the day I have to stay in a dark room all day because any type of light sends me reeling into a migraine?
  • · Will today be the day I have deep uncontrollable coughing?
  • · Will today be the day I come down with a virus because my immune system is too busy attacking me and fails to attack real invaders?
  • · Will today be the day I have to lay down all day because every joint in my body is painfully inflamed and I can’t walk without assistance?
  • · Will today be the day I drop everything I pick up because my hands are too weak to grip?
  • · Will today be the day I can literally see my hair falling out?
  • · Will today be the day my blood pressure is so low I’m afraid to stand up.
  • · Will today be the day I realize how crappy I feel and I break down and cry
  • · Will today be the day someone says…”awww…you look fine….you’re not sick!”

Or will today – be one of those rare blessed days – where I actually feel pretty darn good! I can walk, I can talk, I can see, I can hear, I can breathe, I’m not dizzy, and I’m happy! It’s going to be a great day. These are the days I cherish and want to share with family and friends. Those other days – I still need you – but please excuse the Sjogrens- it’s left me quite a mess.

A Fantastic Quote by Collen McKee

"As a feminist, being ill puts a whole new spin on being sick. Shouldn’t I be independent, in control, not a victim? How do I resign myself to needing help, to having to ask anyone for anything? The fragile porcelain doll was never my female ideal. I am a child of the seventies. Wonder Woman never got sick. The needs of your body are valid, and you need and deserve to have them met. Not asking for help when you need it is a great way to go from under the weather to sick. Feminists value the female body. Let that begin with yours."

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    • brakel2 profile image

      Audrey Selig 

      6 years ago from Oklahoma City, Oklahoma

      Excellent article. I have a friend who suffers from the disease. You explained all the symptoms in an easy manner and then explained good days. It is easy to understand the pain and suffering from autoimmune diseases. However, many people do not know about such diseases, so thanks for sharing. Now people will know about this disease. Good luck as you fight to get better.

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