Invisible Illness and The White Flag of Surrender

Judy’s Journal, Collage

I don’t know how you felt when you saw my post The Heart of the Battle  the day before yesterday.  A few commented that my haiku in the post expressed extreme sadnes.  I looked again and believe it’s a tired resignation  –  this is just how it is living with invisible conditions.

 

Haiku Heights
prompt, free
With resignation
freedom comes tip-toeing in
hushed breath of being

You see, invisible dis-ease and conditions have a layer to them that visible illness and conditions don’t.  I can’t SEE anything wrong with me and I  begin to believe that maybe everything is all right.  Perhaps I’m imagining the symptoms, exaggerating the symptoms.  Perhaps I am even causing the symptoms.

How I look and how I feel are not congruent.

About 10 years before I was symptomatic a woman

Judy’s Journal, Collage & Mixed Media

was referred to me in her late 50’s – I was in my early 40’s.  She comes to the first session with all her medical records.  Without exaggeration, it’s a foot thick.  She’s seen doctor after doctor, been to renowned medical centers, had evaluations by teams of doctors at teaching universities, undergone test after test after test and no one can find evidence there’s one thing wrong.  Referrals to psychiatrists pile up.

She was desperate for help. Her panic that no one believed her was palpable.  I’m not sure I believed her either.  How could anyone have so many things wrong with them, from headaches to gastrointestinal, from heart palpitations to joint pain and have every  test be negative.  She looked fine.  I too was unable to help her.

I’m now in my late 60’s.  I have clients today who are extremely disabled by their invisible conditions.  They too are desperate  for help, for relief.  I sometimes catch myself minimizing their pain or disability.  They look good, are smart, funny, intuitive. How they look and how they feel are not congruent.  Just like me.

My white flag of surrender?  There is nothing I can do, nothing I can say.  So I sit, listen and believe them with my heart, if not with my eyes.

20 thoughts on “Invisible Illness and The White Flag of Surrender

  1. This hit a chord. I’ve had ME/cfs for 30 yrs now. The failure is down to medical science, and their refusal to accept what can’t yet be understood. I find humour a great way to fight through.

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    1. Anthony,
      30 years! Bless you. I think that men have it even more difficult than women – at least here in the USA. Men are suppose to be “strong” and work and produce and overcome, blah, blah blah. Are “ME” and “Fibromyalgia” one-in-the-same? I do know that in different parts of the world there are different names.
      Finally research has begun in the US now that the pharmaceuticals have figured out there is money in it. That’s the good news.

      I completely agree that humour is the most wonderful way through. And you have a great sense of humour. I’ve enjoyed your blog.

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  2. Perhaps it feels like surrender– but the art of listening is a very special talent. Listening is validating; it’s such an important facet of living with a chronic illness — knowing there is someone out there who will listen and who believes is a very precious and soul-deep act.

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      1. Oh, I agree that listening is exhausting — when I was out in the world, I spent a lot of time listening to worries, problems, painful memories, etc.
        As a therapist, it must be harder than listening as a friend. I was thinking of how you have listened to me! And was thinking of that.

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        1. Phylor,
          I LITERALLY JUST read a post by Richard Branson (the CEO of Virgin Airlines – love the name) on his 5 top tips to start a business. Here’s #1 !!!!

          “1. Listen more than you talk
          We have two ears and one mouth, using them in proportion is not a bad idea! To be a good leader you have to be a great listener. Brilliant ideas can spring from the most unlikely places, so you should always keep your ears open for some shrewd advice. This can mean following online comments as closely as board meeting notes, or asking the frontline staff for their opinions as often as the CEOs. Get out there, listen to people, draw people out and learn from them.”

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  3. I know, my friend. This has been an extremely trying year. The resignation phase is tough. To realize that this is what it is takes everything out of you. I want the fight back because being resigned to this pain sucks.

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    1. Rose,
      “Trying” is putting it mildly for what you’ve endured this year. For me, after the pain of resignation it was a bit freeing. However, I will admit I sometimes go through the hope – FIGHT – RESIGNATION – hope – FIGHT – RESIGNATION phase a couple of times a day.

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  4. The more we ponder on what might be wrong with us other than getting on with it, the more we suffer.
    All dis-ease starts in the mind.
    This life is a play- We can make it a comedy or a tragedy depending on our state of mind.
    Love and blessings 🙂

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      1. Tiger,
        I enjoyed your provocative post and am delighted my own post inspired it.
        My belief:
        All illness, as is everything else, is essentially a spiritual “crisis/opportunity/test” to learn that we are not our bodies, this stage in human form is temporary and we have the free will to determine what we do with the experience of illness etc.

        I follow the Baha’i tenants although I am not a Baha’i member. My belief is that since earth is the first step in eternity it is a place of tests to learn love, compassion, that we are all connected and all religions “pray” to the same God. We pass on to the next realm, free from ego, where there is more learning.
        Reincarnation does not exist as it is an “ego” construct to believe that we humans choose & determine our lessons and our destiny. Yes, we have free will as humans but it is God who creates the soul and determines where to send it and it’s inherent capacity and character.

        Obviously I could go on and on. If you have more curiosity this is the “official Baha’i site:
        http://www.bahai.org/

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  5. Even when we KNOW what it’s like behind the curtain, it’s hard to get past what sits in front, looking so fine. One could understand why someone might wish, if for only just a moment, that their illness was visible so people would believe and understand. Well, I’ll tell you… one of my normally invisible ailments (Meniere’s Disease) stepped out on stage and became all too visible one night last week. Not a pretty picture. All in all, I’d rather things remain behind the curtain.

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    1. Oh my gosh Patti,
      For some reason I didn’t know OR didn’t remember you have Meniere’s. Aye, yi, yi, that is really a difficult malady. I cannot begin to imagine what that is like. I so hope you are doing better.

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