Sunday, November 25, 2012

The Remission Myth

"Hope is definitely not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out."- V.C.

In the complex land of the chronically ill the word "remission" is thrown around a lot like candy shooting out of a pinata. Everyone wants it and you'll fight even your best friend for a  piece. Scrambling around, excited, scared, and hopeful we reach out blindly trying the latest drug, treatment plan or diet. And so we fall to the floor despite our dignity in what becomes another vain attempt to rise up triumphant.  All too often, like the kid at the party who was just too small, or too slow, or too weak, we are left holding a only few blades of grass and our disappointment. No candy. No remission. 

For those of you still unfamiliar with the terms "remission" or "flare," here's a little Chronically Ill Vocab 101 to put things in perspective: 

1. Chronically Ill- you are sick now, have been sick for months and will continue to be sick for the rest of your life. 
2. "Sick"- does NOT mean the flu. It can consist of muscle, joint, skin or internal pain. It can consist of swelling, fatigue, brain fog and many many other things. 
3. Auto-Immune- Your body is attacking itself. It cannot distinguish between healthy cells and normal cells so basically it's just raping them all and wrecking havoc on whatever it feels like. 
4. Flare- When a chronically ill person gets worse. Symptoms are heightened or those that were dormant come back. 
5. Remission- a time period in a chronically ill person's life when he/she is symptom free for a prolonged period of time (technically the person will be symptom free AND medication free- that is the TRUE meaning of remission) 
6. Cure- ha...that's funny. 


I have heard many of my fellow chronically ill blogger and FB friends bring up and talk about remission. For themselves. For me. For others. But the truth is, after MY last flare, I have given up on hoping for remission. I have given up on working towards remission. Remission is a myth.  

Now, for those of you ready to throw your computer across the room and yell at me and tell me that I'm a cold, hopeless bitch...please read on to understand why I feel this way. 

The myth goes like this: 

Disease meets person. 
Disease attacks person. 
Person fights back with a gun.
Person gets tired. 
Disease keeps attacking. 
Person fights back with a sword. 
Disease slows down. 
Person meets Remission and falls in love.
Disease hides in the corner watching the love story.
Person fights back less.
Disease returns with a vengeance and steals Remission.
Person fights with gun and a sword to take back his/her lover.
Disease laughs and runs off with Remission into the sunset. 
Person is left with the scars. 

Now, I know this sounds bleak...BUT this is what the remission myth does to the psyche of the chronically ill said person. 

You see, after my last flare I've had a lot of time to put things into perspective and understand where I went wrong and how I could have let it get so bad. What happened is that I was working so hard to go into remission that I failed to recognize the signs and symptoms of shit hitting the fan. I also failed to enjoy my life because the only thing I cared about was getting better. Making the disease disappear. That, my friends, is no way to live. 

Instead of working towards remission (because I've said it before and I'll say it again, this is NOT cancer. There is no cure. "Remission" is as close as we're going to get.) because we all just assume it's better than where we're at, I am going to enjoy where I'm at as much as I can. Who says remission is going to be better? I'd much rather learn how to live the best life I've been given and know that I lived everyday serving my purpose. Why live for an uncertain future when you can have all the happiness you choose to accept in the present? 

I didn't stop working towards remission because I failed. I have stopped working towards remission because I already have enough scars. I have accepted that this is my life, and dammit, I'm going to make a good one. I still work hard everyday to live as pain free as I can but the future of my pain is not my number one concern, the rest of my life is. 

In the chronically ill world we have replaced the word "cure" with the word "remission" and many of us have suffered for it. We are not going to be survivors because these illnesses are for life. Whether they kill us or not, you don't "survive" Lupus or Rheumatoid Arthritis. You live with it. Until the day you die. We should not hope for an elusive act of magic or divine intervention. Instead we should be certain that we are where we were meant to be and that our lives and our dreams have a purpose. At the end of every day we should only hope that tomorrow we are able to wake up and do it all over again regardless of how many pills/naps/accupunture treatments it takes. 


  1. I am so glad I found your blog. I was diagnosed with localized scleroderma (morphea) about 8 months ago. At first it seemed to be only a cosmetic issue. Then, out of nowhere, I started getting horrible joint pain and relied on pain pills to get through the day and be able to be "normal". Finally, my medicine seems to be kicking in and I am feeling much better. I still feel so new to all of this and am trying to learn about it, but feel very confused!

    Glad I found your blog!

  2. So... in a nutshell: you found your "soulmate" - ACCEPTANCE! Welcome to the "Road Less Travelled". It's a much easier path: fewer high /low spots, hardly any bumps, and if you come to a curve, it's NEVER a blind one! Enjoy, your new - found peace and Please keep sharing it with others! . - Csailor @inspire

  3. Thank you both so much for your comments and for reading! Lana, if you need any advice, or questions answered I have plenty to share. So don't be afraid to ask! We're all in this together. And yes, I feel like I've finally reached a place of acceptance and it does feel REALLY good. :)

  4. Thank you Jasminne for your blog. I found it an interesting read one that I can relate to in a way. I got diagnosed this year and was in a lot of pain (painkillers did nothing) from February till October when I finally got seen by a DR who new what the was dealing with and got me tested and started me on hypertension and steroids. Then in the last 10 days i have been on Myfenax , just increased this week to double dose. Only evidence of feeling better are my finger have improved with ulcers and split skin which is a luxury:)

    The side effects oh my goodness, I feel like poo. Sick, dizzy. My great uncle dear man who is a lot older 88 warned me on painful Achilles , he ruptured his as steroids weakens tendons and bones. I will start on bone protectors soon but they wish me not to be on steroids long term. My cough is a lot worse, I have Pulmonary Fibrosis through Systematic Schlorderma . I only explain so you seen where I am coming from. This is all new to me and took me a while to accept it and I agree you have to really do that. I haven't felt sorry for myself but do get days of tears and frustration and swear to myself a bit:)

    The fellow guys here are great and Inspire generally the people are really nice and positive. Sea-sailor you get everywhere, is there a sea you haven't sailed?!:))

    I wish for once I would not have a pain , or an ache or a sore finger , or achy wrist, or sore shoulders or swollen legs where socks have been, (wear them lower now) , tooth ache, gums. I list a few aches and pains as whatever you may be feeling one day to the next we may not understand every exact pain as never one the same but we understand what it makes you feel. I am always checking my Inspire if anyone wants to say hi!!

    Off to get forty winks!! One thing I don't do is tell family, or friends how crappy I feel, don't moan and feel better for it! I may have it but it hasn't got me without sounding cheesy!!

    Have a greeeeaaatttt day!!!



  5. sorry my keyboard has done errors, my English isn't normally so poor. Apologies.

  6. Good to share with family, there are a couple I am close with but do not go on as with me once I start boy I can go on especially with these steroids not just eating attacks but chatty too!!Nite:)or Morning!