From my blog at

You often hear the word survivor used to describe someone who has overcome a life-threatening illness or situation. There are survivors of cancer, strokes and heart attacks. There are survivors of natural disasters, poverty, rape and of war.

There is no doubt whatsoever that every one of these brave and triumphant individuals should be celebrated. They have each earned their badge of courage, and they are a symbol of hope and strength to others facing the same challenges.

Still, whenever I hear this word spoken, I can't help but wonder to myself... what does it truly mean to be a survivor? Does it mean to have once been ill and to now be healthy and disease free? Does it mean to have faced an extraordinary hardship and come out the other side? What of those who fought but lost the same difficult battle? Did they not struggle through with the same amount of courage and determination? Did their spirit remain strong and intact despite not ultimately being victorious? And is that not the true victory in the end?

And what of the chronically ill? What of those of us who have suffered a debilitating disease day in and out for years and years on end? What of those of us who face all the multitudes of suffering and loss that come with an unabating chronic illness, and yet do not allow it to daunt our spirits? Are we not survivors as well, even though we remain ill?

I believe, unquestionably, that we are.

Viktor Frankl, a psychiatrist, author and (yes) holocaust survivor, writes: "The greatest human achievement is not success, but facing an unchangeable or difficult fate with great courage."

Success isn't always about winning. It's about how the battle is fought. It's about having the hope that we will eventually conquer despite the odds, and striving for that victorious moment with courage and grace. It's about how we face our obstacles, and not necessarily on when or even if we overcome them. There's more than one way to overcome an obstacle. There's more than one way to be a survivor.

Those of us dealing with a serious and debilitating chronic illness can often feel we have failed in some capacity. Society doesn't look well upon those who have not achieved the usual perception or definition of success. This is often further compounded if one's chronic illness is invisible to the casual observer. Others can't always see our struggle, our determination, or our courage. As we fight the battle of our lives, perhaps even FOR our life, we are not recognized. In fact, we are often ignored. Worse still, we can even be erroneously seen as malingerers. Thus, on top of combating illness, we must also combat against the misconceptions of our illness.

And yet, we still don't give up. We continue to rise to the challenge, even when we may no longer feel we have the strength to do so. We learn to cope, to focus on the small joys of our lives, and every day, to keep up the fight. Stripped of many of the things we once thought defined us, we are forced to look within, and find out who we truly are.

In other words, we discover that we, too, are survivors.


I agree; survivors are those who survive their personal battles intact and grow not necessarily those who conquer an illness. What is life after all but a process of determining just how 'intact' we are at the end; how present we are to life and opportunity - essentially who we are? In the end there will just be us and the void and all the other stuff will drop away.

Life is filled with great battles such as career and family but ME/CFS is an extroardinary one. What a challenge it is! If we're all wending our way on some sort of spiritual path - being confronted with the different challenges we need to ultimately succeed as human beings - think what a challenge ME/CFS presents. Surely its one of the steepest of challenges - perhaps not given to those who would be destroyed by it.

Some Buddhists when they get to a certain point purposefully immerse themselves in difficult situations in order to accelerate their progress. Why ME/CFS? Who knows? Perhaps it was for the challenge. Look at all the things you get to confront with this illness; isolation, derision, inability to progress on virtually every societal goal, the pain of being unhealthy - what a magnificent challenge it all is.
Beautiful post, Laurel.

To survive, day in and day out, in a situation that never seems to improve, and that there is no guarantee will ever go away ... is tougher I think than having survived and come out the other side.

Here we are, still in the battle. Still dealing with the challenges, with our meager energies and resources. Often with little or no support from the outside.

We are survivors. And not only survivors.

We are friggin' heroes.

You, Laurel, you are a friggin' hero. :)

Thank you for writing this, and for sharing it.
Thanks, Cort and Jody! You both make great points.

CFS is really the ultimate challenge -- there's no aspect of life it doesn't effect. I think all of us with the illness have discovered that, though so physically sick/weak, we are much stronger (in a spiritual/personal sense) than we could have ever imagined ourselves to be.

We are definitely all heroes! :)
Thanks for this Blog, Laurel. This is a very good reminder and Cort and Jody make good points too. I read a lot of NDE (Near Death Experiences) and many of them say we are here for soul growth. That our souls grow much faster here than they can in Heaven. I think Buddhism is based on these beliefs.

Thanks, Tee. :) I've read that philosophy before as well. If it's true that we are here to expand/grow through life lessons, CFS must be the ultimate accelerator course. ;)
Hi Laurel,
I've been wondering how your XMRV test results have affected your life. Is it better, worse or the same? When you are up to writing about it...

Best to you.
Having had cfs and fm for 21 years, having been a 200 member support group leader and newsletter editor, I can say that I have never seen such COURAGE in my life.

To be able to make it through each day with an attitude of taking care of yourself and even others when you feel as if you may die any minute shows you are still living life to its fullest despite pain, exhaustion, misunderstanding, loneliness, isolation and fear of the future takes IF...intestinal fortitude.

Courageous Heroes, all of us!

Wonderful to see it said...thanks!
Thanks, Txfriend! :) Very well said and much agreed.

Advocate -- I hope to post a new blog entry when up to it, though not much has changed since finding out the news. I haven't been doing well from a previous crash so I'm not able to write much at the moment, regretfully.

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