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What do you wish others knew about Lyme Disease?

How unpredictable it can be!!

The brain fog. Just because I’m there infront of you physically doesn’t mean I am mentally.

How the symptoms never really go away even once you’re “cured”.

That Lyme disease is an invisible disability and deserves respect.

That you can look amazing and then feel the complete opposite and that it’s a bigger deal than they think.

That just because I appear strong and healthy one day doesn’t mean I will be the next.

I wish people knew that it is every day… Every single day. Not just now and then when they pay you a visit and you probably talk about someting else because you’re glad with the distraction they bring. It’s all the time: Pain, depression, fatigue, worrying about the future, about finances, … It never ever stops.

Lyme Disease is a silent slow killer.

Wish they could know just how bad we feel.

Lyme disease will change your entire life. But it can’t take away who you are as a person.

Especially for our closest loved ones; please stop trying to make excuses for why the way we feel. We don’t need more exercise, or better nutrition. We are sick, because we are sick. None of that will get rid of our bacteria that’s manifesting in our body.

That by uniting together, we become stronger. Also, just because we look “healthy” on the outside doesn’t change the struggles on the inside – This is not a failure to thrive. Actually, it shows massive resilience.

That while Lyme does have a tangible biological component (duh) the symptoms are heavily exacerbated by corrupted thought patterns and ideas brought on by pressures from modern society!

That this is just as serious as cancer, MS, and HIV to us who have it. Don’t dismiss us or our symptoms just because someone else with Lyme managed to beat it. I am not that person and they are not me.

That my normal amount of energy is about as much as a healthy person on two hours of sleep. And no, I am not stoned.

Get the expensive full panel tests instead of the cheap one! I would’ve been diagnosed years sooner if my old family doctor would’ve ordered the full panel like I kept begging him to do…

I wish that the Australian Medical Board recognized that this IS happening in Australia too, and therefor allowing us to be educated & tested with less expense..

People to understand the seriousness and dibilitation it is for some of us. We are trying our hardest. Some days I look normal…I guess…but doesn’t mean I’m okay or miraculously better.

How hard it is to diagnose, treat, and live with.

That it is chronic and not curable.

That if you are treated for Lyme, and your doctor says you’re cured, then your symptoms come back, you still have Lyme!!

That it is sexually transmitted.

That it is totally debilitating and soul draining. It will bankrupt you and bring you to your knees. No one understands what you are going through until they live with you daily. It’s a lonely existence and at times you want to give up, but you can’t let it win. You have to dig deeper. No one knows the strength it takes to have this disease. The frustration, anger, hurt you feel. No one knows you cry alone, but are brave for others face to face. They don’t get it. Friends abandon you because they don’t know what to say. People are afraid. Afraid of losing you. You are terrified because you are losing yourself. So many things to say, but you push it all down to gain strength to fight. Alone.

How it is a 24/7 job harder than most ones to live with it!

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