Tag Archives: chronic illness

Faraday & Illness

Today I tweeted:

I remember how horrifying it was to turn around and suddenly not remember things that were basic and intrinsic to me.

Like trying to walk on a leg that suddenly wasn’t there.

It wasn’t “oh, where did I put my car keys” it was “what are the letters in the alphabet?” “How do I type again?”

And what cartoon Faraday says about not being only to hold the whole in his head but only things in parts, that’s exactly what it’s still like.


Sympathizing

The best way to sympathize is to listen, to ask questions, and to try to understand.  I’m not always good at this, myself, but I hope that I can at least try to deconstruct what it’s like from the other end, so that we can all learn how to do it better together.

For example, one of the most popular “sympathetic” attempts people make on me is for them to try to show me how they understand my illness because they know what it’s like to be tired.  (This is the unfortunate consequence of having an illness named Chronic Fatigue Syndrome rather than something ominous and obscure-sounding like fibromyalgia, lupus, or even cancer.  Before you speak, ask yourself: would you commiserate this way with someone who has any other disabling illness? Why not?)

This type of commiseration happened to me again twice today (as I write this).  The second time, I just shook my head and told her it’s not like that at all, rather than let her get away with it.  Still, I’m much better at expressing myself through writing.

So without further ado, here is my attempt to answer this phrase via Twitter with a slice of life snapshot,  to try to write up a pithy comparison to what a normal health life is like vs. a chronically ill one.

  • Being tired all the time because you’re overworking yourself is not the same thing as having a chronic illness, just fyi
  • Went to the library on Thursday, found I couldn’t remember the alphabet nor could I see any of the books on the shelves #chronicillness
  • On Friday I opened up a book to start reading, couldn’t even read one sentence before I stopped seeing the page #chronicillness
  • Was exhausted, sick & teary all day Friday, but my body forgot how to flip the switch for sleep, had insomnia till 4 am. #chronicillness
  • Woke up, couldn’t eat without feeling like I was just going to puke it all back up. Am getting good at this nausea thing #chronicillness
  • At least I haven’t had heart problems this week. #chronicillness
  • If I used Twitter to vent about my health whenever I felt poorly, you’d all get tired of me reaaaal soon. #chronicillness

Satisfaction &/vs. Hope

One of the number one difficulties I’ve had over the past two and a half years of my illness is verbalizing to those who are not ill the lesson that I’ve learned about having peace and satisfaction with who I am and where I am.  My listeners’ automatic reaction is to assume that 1) I do not have the faith required to be healed, or 2) I do not have hope in being healed or recovering in my future.  Then they hasten to “teach” me all about how my approach is wrong.

Granted, they may be right in regards to #2, at least sometimes.  There have been times when the enormous friction between my present and my past–or my present and my future–has worn me out to the point where in order to be happy, I’ve had to give it up, to just let myself be who I am and where I am right now, and not worry about “healing” or what all may or may not be involved in the process beyond managing my own present better.

Maybe that’s a lack of hope.  I used to think I lacked hope, until someone once told me that hope is far more pervasive than that. Hope isn’t just about the future, hope can also be about your present.  Hope is the power to see the goodness in your darkness.  It is the power to overcome despair and sadness with humor, cheer, and optimism, (despair is from the French désespoir and means a lack of hope).  Hope is the power of knowing that all things, even the hard things, will work together to make you stronger, more compassionate, more courageous.  Hope is the power of peace in every moment.  It lets you see why you are here, now, in this moment, that it builds you up towards some end goal, and that whatever beast you are facing can be tamed.

There are some people who will suffer with their condition or illness all of their life.  To tell them they lack faith or hope, especially when they do not in fact lack these things is cruel.  To misunderstand them when they talk about the lessons they’ve learned about finding joy in their present, building sandcastles and making their present richer, mores satisfying and more enjoyable–to misunderstand them is inexcusable.  Please stop and listen to them, they may have something to say that you can then apply to your own present, to your own challenges, to make your own present life more fulfilling–wherever you are in it.

And yet, there is one facet of hope that I must not ignore while I take satisfaction in my present.  It is the prescient power of Hope, the power to believe–and to work towards–a change of your present so that your future won’t be more of the same.  It is letting go of fear of The Unknown, and embracing the Better Unknown instead.  It’s being willing to walk into the dark tunnel of change, not knowing what awaits you on the other side, or even how painful it will be to get there.

It is a letting go of control over your life, and giving it up to God or fate or the future or someone else.

This prescient hope, this hope that is a force for change, is only a part of what heals.  Healing begins first in your present, creating greater peace, calm, and happiness.  Then it extends backwards and forwards–looking more favorably into your past, and weaving itself into a brighter future.  At least, that is becoming my experience.

There is a famous and wise saying: learn from the past, live in the present, and plan for the future.  Whenever I talk about making my present a better place to live, I hope you will not mistake me.  I am not ignoring the past, and I am not shutting out the future.  I am only discussing all the weeding and planting I’ve been doing in my present.  There has been a lot of work to do, and I have learned a lot from the endeavor.

– –

For those who don’t like large blocks of text, read the Twitter-condensed version:

The delicate balance of the chronically ill: learning how to both accept & appreciate where you are, yet still have hope in something better.

Those who are healthy will want you to be healthy, impatient and unsatisfied with your present.

Those who are ill will find it hard to imagine anything could be different or better.

Accepting your present for what it is, for its joys and sorrows, does not mean you do not–or should not–have hope for a better future.  There can be peace in any present, as well as joy in any journey.


Forgive the personal moment:

The worst part about being chronically ill is the inability to explain what it’s like to those who are not, (especially one that is 80% of the time invisible to others’ detection). A click of understanding is tangible. You feel when it’s there…and when it’s not. No matter the “good intentions” or the sympathy.

I remember being on the other side of the wall years ago, trying to understand my friends who were ill. How far away I was from understanding, though I really did try…. If there is one thing I would never trade, it is the knowledge I now have of what this is like.  In the mean time, I’ll keep trying to find ways to show, explain. It’s the least–and most–I can do for all the others who are suffering and will suffer this way.

Without understanding, there can only be loneliness….