I read a post in a support group today and it struck me so profoundly.

It read;

This isn’t living. It’s existing. When does it get better?

So simple and yet so powerful…

In this short post all the feelings and all the pain are laid out and every person could feel the emotions contained in those few words…

If you have any real knowledge of chronic pain then you will have asked yourself this question at least once. I have asked it at least a million times over the years.

As I studied the words over and over I realized that I felt like I couldn’t answer this person because they don’t know me and they will not really be able to comprehend what I wanted to write without knowing me at least a little better. Perhaps I didn’t want to say what I really thought. Who knows? But here is some of what I really think.

Sometimes these diseases really are just existing and as awful as it seems it doesn’t make it any less true.

Sometimes all the nice words, positive memes and inspirational sentiments can’t erase the fact that it really can be a 24/7 existence of fighting one painful moment to the next for some. There is no guarantee that tomorrow will be any better. It could even turn out to be worse.

Pain changes you and your life forever and there is no one out there that we should look upon as more successful or better chronic sufferers than each other. There are just other people and people with different pain. Simple as that!

As I look around me I try not to berate myself for not being as inspirational as someone else claims to be and I can’t afford to let them make me look down on myself… It would be a quick downhill slide if I did. So I try very hard not to do that to myself while I am suffering enough. That in itself is enormously difficult in this success obsessed world and all its positivity porn. Everyone wants to claim to have all the answers but I have come to believe that they don’t. That’s my opinion anyway.

I try not to tell myself to wait until things improve because what if they don’t? Five years ago I was convinced that things couldn’t get worse. I was wrong! So I try not to imagine what next year will bring.

When I tried to move my leg today and I screamed out with hot blinding pain I became sad that another precious day was being snatched from me but then an hour later my husband walked into the room and showed me a picture of a tree flowering in our yard and peace washed over me like a cool breeze. Momentary peace and refuge… Go figure!

Do I think it’s fair that I spend every waking moment and most nights in unrelenting pain? Absolutely not. I don’t think I will ever think it’s fair. Ever. And I don’t think it’s fair for others who are suffering either. But it’s happening all over the world and most of the pain no one will ever see or comprehend! Not even doctors!!

Do I think it’s fair that people will judge me even though they have no idea what one minute in my body feels like. Nope! Never! But wondering why they do it won’t change one single thing about my day or my existence. It won’t change them either. Its just another thing that has little significance on our survival or existence.

Today my existence is made possible by little things. Pictures. My husband. Corny jokes. Pinterest. The sun shining for a moment. My furry companions. The arrival of a package in the mail. A smile. A cup of good coffee. A whole string of things. Lots of little things. Maybe they total only about an hour in one day but that is something to me. That is existence as I know it.

Survival and existence mean very different things for people in chronic pain and there is no simple ways to calculate how much we can tolerate. Some days it’s very little and some days it’s a little bit more.

How long do we have to suffer like this? I don’t know. And I don’t judge anyone who chooses not to suffer anymore.

I am grateful for the moments when I made it through the crippling pain of it all and I consider each day a personal victory that not many others can ever fathom.

Sometimes when there are no answers we have to rely on little things that can make the slightest bit of difference for ourselves. Sometimes that’s all we can do.

When considering the whole concept of existence it makes me mindful of many different things. For centuries there will have been many countless lives all over the world that seemed to be merely existing. Does that mean that they don’t matter? Often we mistake existing for not mattering. When we feel we don’t matter that’s when we find it harder to exist. At least those are some of my thoughts on this topic. When I feel my suffering means nothing those are some of the hardest times in my battle.

We learned that millions of years ago dinosaurs roamed the earth and we now know that they existed by the footprints they left behind. Perhaps the same can be said of all life? We remember the footprints people make. I recall many of the people I have met not because of what they did or what they achieved but by how they made me feel or the marks they left on my mind and heart.

Today I appreciate those people that help make this difficult life a little more tolerable by kindness and remembering that I matter. Sometimes it can be that simple.

These days I try not to ask the questions I can’t answer and I have learned to be careful to what I listen to and who I listen to because I believe these are the best things I can do while I am trying so hard to exist.

Gentle hugs,


5 thoughts on “Existence

  1. one of the reasons I like your blog more than alot of other disability blogs is the realness and that you don’t get caught up in ‘positivity porn’, its not negative either, just balanced and real. thank you


    1. Thank you for your words and encouragement. I have always wanted to stay true to my reality whilst always acknowledging the love, peace and kinship we share with our chronic brothers and sisters. I never try to speak for anyone else but I sincerely hope that everyone with an autoimmune disease or chronic illness feels a dignity and kinship with everyone else across the world.
      Thank you for sharing your feedback and I send you my thoughts and best wishes! Always.


  2. I find that the more I focus on the grandchildren the more tracks I leave. A few of those will be found in 50 years. Even if they are faint.


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