The following are quotes are taken from the UK Lyme Discussion page on Facebook which has over 7,000 members. They were asked the question: “what is it like living with Lyme disease?”
I thought I would include this not to evoke fear or misery, but to give a voice to those suffering who are currently being ignored by doctors and by insurance companies.
Not knowing for definite because they won’t just test you on the NHS is some next level mental torture. Should I even be here? I am going with ‘Anguish’.
Torture and an Alice in Wonderland experience. I regret going for a walk to keep healthy. The denial by NHS and lies.
It’s like being in purgatory. You spend your ‘existence’ watching life go by from a window.
A crippling, purgatorial, life-destroying disease – which you then get mocked for and disbelieved.
Limiting. Life becomes about doing what you must or can do rather than what you’d like to do. However it’s also a voyage of discovery. You learn what really matters to you, and it’s humbling. I am one of the lucky ones who are not so badly affected. I am lucky.
A death sentence.
Watching those around you enjoy life and you are deprived from it.
Frustrating because your body can’t do what your brain or heart are telling it to. There’s complete discord between them. I’ve had to give up on my dream career not because of lack of passion or skill or knowledge, but because I am physically unable to do what is required – I don’t have the body strength.
The devil’s disease.
Having Lyme Disease is like being locked in a windowed box filled with pain. You can only watch life go by from the inside, while everyone you know is out participating, you sit isolated in agony on the inside, watching.
Frustrating & limited. Grieving for my life that was & wish I could have back (one day perhaps).
Not being believed by the NHS.
Constantly feeling ‘off’ and frustrated at all the things I can’t do.
Indeed, this is a tremendous disease, on the other hand it can teach (oblige) you to treasure the small things. From certain points of view this disease is my best friend- I became a kinder person. I think everything is a lesson.
It feels like being gang-raped at a cellular level 24/7. To me, a rape is when something invades your body without your permission… that’s exactly how I feel, violated!
Terribly sad knowing the life you left behind and knowing you have to accept this new version of yourself.
It’s years, of constant ill health, a lonely, invisible, daily battle for the body you used to own.
Soul destroying and has ruined my life.
Isolation and abandonment.
The joy of suddenly remembering what life used to be like, on those occasions when you have a good day. The tears which overwhelm you, when it all gets too much and you wish you ( and the doctor ) had known what a huge bullseye rash signified, because then you would have been treated in time.
Totally incapacitating in so many respects. My whole body feels like a piece of fruit, left to go bad, rotting.
Life destroying. I don’t really have a life as in bed most of it or indoors feeling rough or half dead. I would love my old happy appreciated life back.
I was never as sick as other people. I found out what it was fairly early – and for that I am grateful. Its a long term challenge.Life becomes a game of snakes and ladders, just as you think you feel fine, you get dragged back and have to start the journey yet again.
Worse than my ex.
Frustrating, torture, depressing, scary. I’m only 17 and it’s made life into one big struggle for me.
A very lonely place. Had it for 23 years, some of those more difficult and scarier than others, but all in all, I consider myself ” lucky” as i am functioning some of the time.
Hell! Looking good on the outside while feeling like you are about to draw your last breath due to pain and fatigue plus many real symptoms. Lyme is like nothing else! It’s a stealthy infection with no understanding in the works and world of the NHS.
Steals your life away.
I am misdiagnosed and misunderstood.
I’m tired of being tired, and by tired I mean feeling like I have flu every day. It’s too much to even have a shower but you have to. You get frustrated but you learn that it takes more discipline to rest than to push yourself. The worse thing: lack of support as awareness and understanding is extremely poor.
I’ve given up on the person I used to be. My mental and physical abilities deteriorate almost daily.
Lyme changes you – it’s tiring, it’s painful, it messes with your mind, it robs you of your memories — it’s horrible.
It’s a physical, emotional, and mental assault on the body. The only two words I have for it, are hell and torture.
Lyme stole years of my life and still fighting – every day is pain, uncertainty. But i am a better person now.
Disappointment – nobody believes you are ill and you have to wear a mask pretending it’s not there.
I am shadow of my former self. Every day is a physical and mental challenge. I feel judged and misunderstood by those around me. A nightmare roller-coaster that you can not get off – disabling you in every way possible.
Soul destroying. Painful. LONELY. Depressing. You don’t have a life, but your family have to carry on around you. You feel like you’re letting everyone down. A failure. I had to stop work which I loved. You can’t provide enough for your kids. No holidays or days out. A LIVING NIGHTMARE.
Ruined my life – I can’t exercise, eat, donor blood or even have love life like a healthy person. Being denied by medical community, staying without any help and much needed medication, being constantly lied by medical “professionals”.
Mostly I go to bed sore and wake up sore. Some days I don’t and I think “great, maybe I’m getting better”. Then I wake up sore and go to bed sore…