It can be particularly frustrating to chronic Lyme patients when they don’t feel understood or feel judged. This happens because there isn’t enough awareness and often patients don’t ‘look’ ill. Lyme disease, often referred to as an invisible illness, can be very much an internal, isolating struggle.

If you are a family member, friend, work colleague, doctor etc. of someone who has Lyme please offer compassion and support. This can make the biggest difference to a patient’s wellbeing, more than you know.

We asked just a small number of the thousands of Irish Lyme patients what it feels like to have chronic Lyme disease. Here is what they had to say. We hope this will give a greater understanding of how difficult this illness can be to deal with:

• Death warmed up
• Please Mammy my head is sore, I want to die
• Hit by a truck… everyday
• I don’t feel real, I’m sore all over
• A prisoner in your own body
• Like someone stole your personality
• Like being tortured physically
• Debilitating fatigue
• Mental and physical breakdown
• Hijacked
• Beaten and broken
• Not feeling like yourself
• Missed out on life
• Crawling up a mountain that moves ever time you reach the top
• Misdiagnosed, mistreated, misunderstood
• Angry
• Frustrated and abandoned
• Life limiting
• Constant jetlag
• Lonely
• Loss
• Barely surviving
• Stiffness and weakness
• Two steps forward and three steps back
• Wack-a-mole
• Made feel like its all in your head….