Tuesday, 12 May 2015

Invisible Illnesses



People are often kind enough to ask how I am.  The answer is usually ‘OK’ or ‘Fine’.  That is for the simple reason that if I’m not OK I am unlikely to be communicating in any form. On average I have one or two ‘Good’ Days each week, a couple of Bad Days and the rest are Liveable With….    Good, of course, is a relative term.  

I met some old friends recently and was delighted to do so – on two counts.  Firstly because I wanted to see them.  Secondly because it was one of those days when I was well enough to keep my appointment with them.  I was picked up by She-who-used to-organise-me and her partner.  They enquired how I was and vice versa – we all said ‘Fine’ with a laugh that indicated we all knew how each other really was but were happy not to go into it.  ‘Fine’ covers a multitude of aches, pains and problems.   I had some idea of her partner’s health issues and they know mine so we didn’t need to go into detail or justify how we were well enough that day to go visiting.

When we got to our destination a couple of folk who hadn’t seen me for years commented how well I was looking.  What do you do when someone says that? I was very tempted to go into details as to all the things that were wrong with me and how I was only there because it was a ‘Good’ day.  However I refrained. I just smiled and thanked them.  It's what you do...



21 comments:

  1. I empathize with your decision not to go into detail when a friend noted how "good" you looked. Before I was diagnosed with fibromyalgia, I kept thinking "what's wrong with me, is this exhaustion and pain all in my head?" Years later in my retirement, I've learned that if I do a lot one day, that the next day, I do very little in order to recover. Those who are closest to me understand, and those who don't....well, I try not to care about what they think..

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  2. When people ask "how are your?", probably they don't expect a full report of aches, pains and problems. If they aren't your friends/beloved ones, they aren't really interested in; it's just a formality. If they are, they prefer that you answer "Ok", "fine" or "good" and you "forget" (if that could be possible) all this for a while. They understand.

    The only ones who really have to listen to your health problems are your doctors. But still: usually they ask you to summarize.

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    1. So true, Eva. My GP is great but even he only has a three and a half minute attention span.

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  3. I know, and have known, lots of people with invisible illnesses yet, sometimes, I forget.

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  4. Way too many people with so called "invisible" illnesses are forced to prove they are ill, and it's awful. And if i ask how you are, you may tell me, and i will listen. It's one of the only things i can do to help, listen, and then pray.

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  5. I'm glad you were well enough to meet up with friends who know you well enough to not ask annoying questions. I realized when I was in Canada (where I found the people so very polite) that I say "How are you?" without really caring what the answer is and when someone told me how they were I got quite a shock. I try not to do that now unless I want to know. Did you enjoy the day? Hope so.

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  6. Everyone asks "How are you?" Only a few really want to hears the answer.

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  7. So glad you had a good day and were able to enjoy your meeting with friends. Take care and God bless, xoxox Carol

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  8. It must be such a hard place to be. I'll bet you could do with a card or something like a scale to let people know, on a sliding scale, how 'good' the day actually is. It would do for all of us to be a little more careful with personal comments like the one made about how well you were looking.

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  9. Yes, very true and very understated. But then, I guess that's the whole point of your post. I just hope my friends who are in this position know that I think of them often and that I am there for them should they need me. But I don't necessarily feel I can talk about things when I am in the position myself.

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  10. It's a strange world. I have lived with cancer treatments for 17 years. I am rarely ill. I feel really good almost all of the time. However because I have the big C and because I limp (I need a new knee but it really is more obvious to others than it is to me) I get lots of sympathy and understanding (which I don't need). There is a very strange injustice to it all.

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  11. Thanks so much for sharing this with us. When someone asks me (cancer survivor) how I'm doing, I just say "Good" - because no matter how you feel, you are doing good even if only in your meditations and prayers for others. Sometimes friends laugh when I say, "But we LOOK good." That's an inside joke for the days when our choir members sounded really lousy, and generally felt lousy about that. Thanks again, from Florence, SC, USA

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  12. I'm finally all caught up with your blog and what interesting posts they were too.
    Trust you to make me wonder about all the benevolent societies out there...really??
    Glad to hear that you're "Fine."....love reading your posts.

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  13. Thank you for this post.

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  14. For people who care about someone with an invisible illness, sometimes it's hard to know when, or if, to ask "How are you?" The desire to know how someone is really doing because you care about them is at odds with the desire not to make every conversation about their illness, in case that's all anyone ever asks about. It's a fine line, and I think that everyone flubs it once in a while. Either asking for too much information, or not asking for enough.

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  15. I can totally relate. I have Lyme Disease, which, in my case, affects my nervous system when I'm having a bad day. I don't 'look' sick, but the list of symptoms would boggle people's minds (if they actually believed me....) My three adult children, my hubby & I all tested positive years back. We are not your usual family - we all live on the family farm in two houses and support each other as best we can. We decided a long time ago that we could only complain on Tuesdays.....that way when anyone asks how you are, if it isn't Tuesday you just answer "Can't complain!"

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  16. It's kind of like living with a relative who is depressed. Sometimes asking "how are you?" can remind them and make it worse. Yet, not to ask can seem callous and uncaring. As Marcheline says, it's a fine line. So please know - I really care about you and how you are feeling, even if I don't always ask. Sending love and hugs and prayers. xoxox Carol

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  17. I don't know why I missed this post until now. I do know what you're talking about... With close friends it's not usually all that much of a problem, because you know that they know, and they know that you know that they know (and so on). I.e. you both know that the "I'm ok" or the "not a good day" just refers to the top of the iceberg; and the iceberg does not have to be further discussed just then. It's with the more superficial acquaintances or lost-touch friends it gets complicated, because you don't know what they know, and how much explanation is needed, or if they really care. Like when you run into someone on the street, and you exchange the polite "how are you" and answer "fine", and then suddenly the next question is "and where are you working you these days?" and you have to explain that you don't - in spite of just having said you're "fine"... Which is where that quote comes in...

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  18. I am glad you got to get out and about and hang out with friends you can be relaxed with. It is a fine line to know when to enquire. A relative who lives in another state said she did not want me calling to ask about her illness because it reminded her of it. Yet, I wanted to show her I care about her.

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  19. I am glad you got out and had fun. It must be very trying to feel ill so much of the time. I think people who tell you you are looking well, are trying to look on the bright side. I have done it myself and never thought that it might offend the sick person Hmmm. So I will give that some thought.

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