I think this poem by Lorraine Simpson sums up how many of us feel:
Listen. I have lyme!
Battling lyme disease is tough
But Battling ignorance and misinformation is crippling...
Its time to listen to the people who really know about Lyme disease the people who have it.
Im not a hypochondriac, attention seeker, manic depressive. Its not all in my mind. Its not stress. Its not ME, its not fibromyalgia.
Your lyme test may be negative
But I am positive I have lyme
You wont listen
You are afraid to be reprimanded by others if you do
A true doctor is someone who listens to there instincts when they treat.
Giving patients dignity, respect and showing your ability to truly listen and look outside of the medical training box.
Follow your instincts, look at the person suffering and give them benefit of doubt not just the benefit of your past medical experience.
Analyse the whole picture not just the text book page.
Believe a person when they are crying out for help not crying out as a manic depressive.
Be brave enough to accept what they are trying to tell you and fight for what they need
Stand up and be willing to accept that you may not know everything
Give us the credit for knowing that we may have Lyme disease and we need your help.
Thousands of people in the UK cannot be wrong.
We are not all hypochondriacs
We just want someone to believe us and help us regain our health.
If you had lyme you would expect that same respect for knowing your own body and mind.
You would be upset, frustrated, depressed, humiliated, exasperated too if you were not believed.
If you were dismissed and made to feel belittled by the so called experienced professional.
You are not truly experienced until you have truly experienced.....
We need a medical voice and every time we find hope in one it is suppressed.
Ignorance may be bliss for you
But its killing us...
Lyme disease exists
Lyme disease can cripple
Lyme disease can destroy lives
Lyme can kill
Lyme needs an ambassador
PLEASE listen, we are normal people who want to feel normal like you.
PLEASE believe
We have lyme and we need your help.....
