Why Those With Lyme Disease Must Fight for the Health System to Help Us


“You are crazy! You are a 23-year-old girl who clearly is making symptoms up for attention. You lack knowledge and understanding about what it really means to struggle with a chronic disease and illness.”

The doctors who say this fail to see I don’t have the magic ability to change my test results. I can’t wave a magic wand to allow damaging bacteria to house themselves within my body, within my major organs simply because I wanted a hug. No. The doctors fail to realize that nobody who is chronically ill asked for this to happen to them. I know deep down they know that.

Many who are chronically sick were successful, high-flyers and dream-chasers. They aren’t people who like to sit on their bums all day, binge-watching series and making excuses not to go to work. They push themselves, wanting and expecting more from themselves and their bodies. Living in denial of their deteriorating health. People around them don’t realize how unwell they truly are because they are lying to themselves and those around them in an attempt to keep going, succeeding and keeping hold of the person they are/were and worked so hard to be.

 

We go to endless numbers of doctors, specialists and consultants to work out what the hell is going on in the body we rely on and expect to support us. Why now is it fighting against us? We eat healthily, we take our vitamins, we stay as active as we can, we rarely drink and we live a balanced life. So what’s going wrong?

We have a symptom list longer than your weekly shopping list. Yet many common symptoms overlap with other illnesses, often leading to misdiagnosis, mistreatment and years of being dismissed.

You are sent to psychiatrists because it must be “all in your head.” Your symptoms change daily and you are only getting worse, not better, with anything they suggest (or don’t suggest). It is far easier to call us “crazy” than spend the money, time and out-of-area referrals to actually try to get to the bottom of the problem.

You are never examined properly, almost like the doctors are avoiding finding something they could treat because then they can’t call you “crazy.” With Lyme especially, we may have to go abroad to get the significant test. I think Public Health England knows this and discards results as being “money-making,” not offering any help or advice. I feel like this ignorance is then passed down throughout the public health industry and we are shut out. Left in the dark.

And yet, behind the scenes, I think they know Lyme is a growing epidemic and are trying to do further research. But if they do indeed know this, then why do they look us in the eyes and tell us Lyme does not exist in the UK, the tests are a scam, chronic Lyme doesn’t exist and we just need a short course of antibiotics?

Now we must fight back. We know our conditions are complex. Lyme can brings co-infections and a cocktail of other dangerous viruses. This means treating patients has to be tailored individually and treatment is most likely lifelong and ongoing. This is alarming to the health industry that runs on budgets and relies on their medical books to give them all the answers they need. They aren’t used to dealing with patients on an individual basis; they don’t have the money and they are already overrun, which I truly do appreciate. So why won’t they allow us to seek treatment where we can get it? Why do they have to become awkward and fight us over the care we are receiving and is helping us?

We all deserve health. It is a basic right. They should be pleased when we finally, after years, receive a diagnosis and are being treated – which is being funded by ourselves. We aren’t being a strain on them and their resources. They should be happy for us and relieved for themselves.

Yes, it is a huge, huge strain on the patient financially to receive the treatment they need. Frankly, if we were just “attention-seeking,” would we really put ourselves under this amount of strain, go through so much and pick a disease (frankly) even I didn’t know existed or to what extent it could be dangerous before being diagnosed? I don’t think so!

So why should our characters be judged? None of us are bad people. We have tried to live the best life we can and make something from our abilities and talents.

Now our bodies seem to be on a mission to destroy themselves, but when we ask for help from the people who are trained and have committed to a career in public health care, we are given the cold shoulder and left out in the cold. This is upsetting, and for many struggling, this is the end of the road. They can’t afford treatment and they begin to believe it’s “all in their head,” causing them to accept this label or hide away, continuing to struggle.

The people we go to to save us are causing us to struggle even more.

How has this happened?

How can we prevent this? This is our time to start raising our voices so they can no longer silence us and put us in the corner.

We need more research, better testing and better treatments. We have to be our own heroes now and save our own lives. Our hard work and fight to be heard and listened to will help future generations. That has to be our number one motivation. To improve the future, and help future generations not struggle in the ways we have.

We can all appreciate the immense strain the health industry as a whole is under, and through fighting for our own health and causes, I hope we can help the health industry to get a hold, gain knowledge and learn more about these rare, chronic diseases so they can nip them in the bud or research effective treatment options to avoid future devastation!

We are far from “crazy.” We are warriors who will continue to fight. The public health industry can try to stop us from receiving the treatment we need, but we are our own people. We have a voice and a right. Nobody can take those rights away from us.

Keep fighting, keep raising awareness and come back fighting fit.

This post originally appeared on Sophantastic.

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Thinkstock photo via kieferpix.

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