What Is The One Thing You Wish People Would Understand About Lyme Disease?

What Is The One Thing You Wish People Would Understand About Lyme Disease?

Lyme disease is still widely misunderstood. As a Lyme patient, being dismissed and encountering astonishing ignorance is the norm. We asked our Online Community to share what they wish people would understand about Lyme disease.

‘We don’t just fight the disease, we also have to fight the system for help!’

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‘It’s  a serious, multi-systemic disease with ever-changing symptoms, some of which are life threatening.’

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‘It’s a living hell!’

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‘It’s a global epidemic and small countries like New Zealand need bigger countries to help us raise awareness to get diagnosed and treated. I went undiagnosed for 30 years, lost my teeth, have had to have a hysterectomy before having the chance to have a family in the end, Lyme disease ruined my marriage. Life can be hell. I miss eating normal food and drinking normal things without experiencing adverse effects such as tingling’

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‘WE ARE SICK FROM A TICK! If we have had the bull’s-eye rash, we have been inoculated by the tick with various infections along with Lyme disease. There are no tests which can define our condition and therefore we are not being treated for the very life changing symptoms we experience.’

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I am asked; ‘Why can’t the doctors do something for you?’ Then you have to explain….WHY.
‘So, if the doctors cannot find something wrong with you…’
The pain and suffering are bad enough, but to then have people looking at you with questioning eyes which depict their doubt, makes things even worse’. The doubt isn’t restricted to bad days. On better days when you are able to go out, you are looked at with suspicion. ‘Is she really ill? I saw her out dancing the other night!’

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‘This a serious disease that can be fatal but rather than help doctors, dismiss it, don’t believe in it, at best are ignorant at worst ridicule sufferers and try to put it down to some kind of mental health issue. The government is doing nothing to research or find better treatments and doctors who do try to help are struck off. Lyme disables, and ruins lives in so many ways that aren’t taken seriously at all,’

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‘I want to make plans but have to live in the moment and be spontaneous because I don’t know how I will feel from one moment to the next. Please don’t take it personally if I cancel, leave early or find it hard to make plans at all.’

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‘That it doesn’t affect my face!’

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‘Just because I look ok…does not mean I feel ok! Grrrr.’

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‘That this is a serious illness that shouldn’t be taken lightly and to add to that, this is a freakin’ painful disease.’

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‘That it is not depression.’

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‘How difficult it really is. Just because I don’t look broken on the outside, it does not mean I’m perfect on the inside.’

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‘Hell, on earth with pain levels that are impossible to describe – it feels as though you have been in a car crash and broken your body in many places. You are left broken with no help, dipped into an acid bath so that you feel like you are burning all over and then poisoned with highly toxic drug that makes every square centimetre of your body hurt. You beg for mercy 24 hours per day, for years on end. The brain inflammation is unbearable and the pain causes extreme anxiety. You are then faced with a lack of understanding and treatment from the medical system and the reality of losing family and friends whilst at the same time trying to find the thousands of pounds needed for treatment. You can barely do anything ‘normal’ like eat, sleep, walk, bath, talk, think, etc. We lose our jobs, our independence and have to fight for benefits, fight the doctors, try to convince others we are ill and are rarely believed. The nightmare never ends if you do not have the means and ability to get treatment.’

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‘That it is a proper illness. It can be incredibly serious and yet the medical profession a lot of the time pretend that it is not. As so many people naively believe that doctors are always right, it makes it very difficult for people to really understand that it is so complex.’

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‘As a mum who has Lyme, I wish people recognised the invisibility – i.e. the outside doesn’t reflect what’s going on inside the body.’

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‘That they cannot see the pain you’re in and how awful it is to watch and feel your badly literally falling apart. You can’t access any medical help which eventually impacts your personality, so you are completely different person but not through choice.’

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I felt It was only fair that I gave my answer to the group too, so everyone can see that I am no different and can relate to all the comments which have been shared above.

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‘The ONE thing I would like people to understand is that Lyme disease is like living in a torture chamber. The key has been lost and we spend hours, days and years trying to find it through treatments and so forth. We can’t just pop a pill or ‘sleep it off’. We simply have to DEAL with the pain and symptoms we experience, and we do this in the best ways possible. This often means cancelling plans, coming home early or skipping an event. It is never through choice but we do it often to protect others from seeing our pain and ultimately try to protect ourselves. We aren’t being cruel, difficult, ‘drama queens’ or ‘trouble makers’. We are dealing with our circumstances in the best ways possible.’

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Understanding Lyme disease and all its uniqueness is difficult for sufferers and doctors to get their heads around, let alone family, friends and loved ones. The experiences shared by members of our community hopefully will help people understand that Lyme sufferers are not crazy or alone in the way they are feeling.

We all experience different symptoms at various times. So, for those on the outside, trying to get a clear picture in order to help them connect the dots, is near impossible. This can leave sufferers open to not being believed. Unfortunately many are quick to judge without listening to sufferers properly or doing their research. One of our biggest wishes is that people see we are telling the truth about our suffering. We try to remain strong, learning to take the disbelief on the chin but inevitably, it takes its toll on our mental health and emotional wellbeing. We must trust our bodies and the messages they are sending us. We can only hope that as this disease comes to light more and more, the next generation will never have to go through the harrowing experience of not being believed. Remember to stay true to yourself and remind yourself that you are not crazy. You are doing the best you possibly can under the circumstances. As a community, we can turn the negativity into positivity and empower ourselves to continue pushing for change.

Sophie Ward.