Open letter to a person suffering from a mysterious, chronic illness

Dear Person suffering from a Mysterious, Chronic Illness,

You’re not crazy or weak. You’re not imagining this. And you’re not alone.

Your illness isn’t all in your mind. This isn’t something you can control. You can’t just buck up and feel better. Or think positively and feel better.

I’m sorry you’ve been told things like that but these people don’t know what they’re saying.

Don’t listen to people who tell you things like that. 

Instead listen to the people who’ve got your back no matter what. Who know you’re not imagining or making a fuss. Who don’t look at you as though you’re crazy. Who support you and care for you and would do anything to see you better.

 
 

And most importantly don’t listen to that little voice in your head telling you those things. It will question what’s happening to you over and over again. Especially when yet another doctor gives you that puzzled look after you describe your symptoms. 

But understood or not, mysterious or not, invisible or not, your symptoms are very real and very physical. 

Chronic fatigue syndrome, fibromyalgia, food sensitivities, multiple chemical sensitivity, anxiety or your particular invisible illness affects what you can and can’t do. It makes it difficult for you to plan anything because you don’t know how you’re going to be feeling. 

By the time you get out of bed in the morning, you’ve overcome more challenges than many people face in a day.

It’s a constant battle with yourself. “Come on. I can do this. I can get out of bed. I can wash my hair.” But then you realise you can’t. The fatigue, the pain, the nausea, the brain fog or whatever your particular symptoms are just make the simple things you were hoping you could do impossible. 

So you lie in bed hoping the energy and strength will suddenly come. Wishing it would but feeling more and more helpless when it doesn’t. 

You wonder why your partner, your friends and your family can get out of bed and get on with their days without a second thought. You wish you could too. You can vaguely remember days when you could. 

You wonder why you’re different from everyone else. Why even people who are older than you can do so many things that you can’t even dream of doing. 

But I’ll repeat. You’re not crazy or weak. You’re not imagining this. And you’re not alone.

It’s not your fault that you became chronically ill. You didn’t choose this or let it happen. 

I know how scary it is not to understand what’s happening to you and to be given no explanation for your strange symptoms which just keep getting worse and worse. 

I know how hard it is to try to keep a smile on your face. To keep strong and try to pretend your world isn’t crumbling around you all over again. 

But please know that the world needs you. Your family and friends need you. And things will improve. Even if today it doesn’t seem like they can.

I know how difficult it is to get your hopes up about something else that someone suggests might help only to be disappointed again. I know you’ve learned to accept your illness and the isolation and restrictions it leads to. You’ve adjusted your life because of it and you’ve made peace with that. You actually like some of the new things you do because of it. 

So why should you try something that I suggest? 

Because I was you. Because I suffered from a mysterious, chronic illness too. 

I knew I would never recover. I didn’t want to hope that things would somehow turn around and I’d go back to living the life I used to love. Able to go anywhere I wanted, do anything I wanted and eat whatever I wanted. Not because I was pessimistic but because it wasn’t realistic. So it would only lead to more disappointment. I knew I had to accept the card I had been dealt.

Until I didn’t.

Until one day I decided to just give DNRS a try. Not because I believed it would work. Far from it actually. I was quite convinced it wouldn’t. Maybe it could work for the people in the testimonials, but not for me. I was different. My illness was different. My symptoms were physical and not all in the mind. So how could DNRS work?

But just because I had literally hit what I thought was rock bottom more than once. Each time thinking things couldn’t get worse before they did. So I figured before things got worse again that I should just take the first step and give DNRS a try. And that even if it helped me feel 10% better it would be worthwhile.

Little did I know how my life was going to turn back around.

 Photo by Rene Rossignaud Photography

Photo by Rene Rossignaud Photography

That I would eventually be able to go anywhere I want, do anything I want and eat whatever I want without worrying about being ill. That I would be able to plan again. Hope again. Be in the world without my illness. Be myself again. Be free again.

And you can too. I know right now it doesn’t sound realistic. I know you don’t want to go through the cycle of hope and disappointment again. But if you can just try that once more, open up to the risk, to the worry of disappointment, I promise you that you won’t be disappointed again.

And I can promise you that because I was you. Because I suffered from a mysterious, chronic illness too. And because I didn’t think DNRS could help me either.

But today I have my life, my hope and my dreams back. And you can have them too.

All you need is to take that first step. Yes I know you’ve taken many first steps and you’re tired of that. But this one is a step worth taking. This one can give you your life back in more ways than you can even dream of right now.

What if? What if DNRS could give you your life back? It gave me mine and it can give you yours. 

And you’re a lovely, strong warrior.

And. You. Can. Do. This.

Love,
Johanna