Don’t explain and don’t complain

The phrase ‘Seeing is believing’ springs to mind when I think about living with

Imperceptible pain, because there is no seen evidence of my illness it remains invisible to the naked eye. I feel this is why it doesn’t seem convincing to many that I could actually have this constant complaint of pain.

I can understand why it is so difficult for people to comprehend, I find it hard to verbalize what my life is like and sometimes I feel there is no point talking about it as it defies explanation.

So after years and years of explaining and re-explaining myself to new people as they came into my life I decided to stop. I was exhausted describing that although I go in and out of hospital I am not really getting any better, just managing. I was fed up telling people that I didn’t even know if I would get better. And in truth when their questions stopped, I began questioning myself.  It made me more acutely aware just how different I felt from others and really how most people, even my good friends and family, had no concept of how I (and many others like me) suffer with pain daily.

I live everyday, like many others, with an invisible illness, we can choose to try to hide it or talk to people about it. For me I tend to stick to my tried and trusted mantra ‘Don’t explain and don’t complain’ and here’s why.

If you do try to talk about it, you often find that as much as people might think they understand, like anything in life, you really don’t know what it is like until you live it every day. For people who live in persistent pain every day, I am probably talking for the majority when I say that, coming to terms with the fact that you experience pain that will never go away is deeply shocking. It goes against everything we have been programmed to believe about pain. We are taught that pain is a consequence of something else, find the source or cause of the pain, then treat the source, and the pain will go. To discover it isn’t going – ever – is probably the hardest thing to deal with. We struggle with denial within ourselves, and along with this, we are often judged socially or within our own circle of friends or even with close family. This judgment or lack of belief is very hard to deal with. Sometimes you feel you need to prove you are actually in pain, this in itself can be exhausting. A simple remark can strike right at your core.

For example if someone said to you, “I am a diabetic”, any sane person would accept this as fact, they wouldn’t challenge it or try to suggest that sugar has terrible effects on them too and say just get on with it! This might seem harsh but trust me whenever you mention being in ‘pain’ it can turn into a competitive sport with some people. Suddenly without warning you seem to be playing some sort of ‘pain poker’ game. It begins with your opponent revealing their hand, often they go straight for the big ‘D’ they have had ‘Disc problems’ in their back, feeling pretty confident, they seem to be looking at you proudly as if to say trump that. In the past I have engaged in this game, I often found myself dropping medical names like ‘spinal stenosis’ to explain the complexity and depths of my suffering. Some poker-faced competitors might take it higher, raising the stakes, revealing their tales of woe about lying on floors all night popping difene for the pain. Here is where I always have the trump card! I reveal my ‘full house’ – Medication…I hear myself saying ‘I could rattle I take so much ‘stuff’ for pain’ Suddenly there is silence, and that’s when I get the familiar ‘look’ from my opponent, it is a mixture of disbelief and then pity.

I sigh.

SO have I won?

Or am I just the biggest loser?

I always feel ten times worse after this little game, it feels utterly hopeless to know that most ‘normal’ people seem to have equal war stories about pain but they seem to somehow be able to ‘get better’ their acute pain responded to the drugs, the treatment, their body healed, what is wrong with me? Once again I am left with more questions.

So for now when people mention pain I just don’t explain. For the second part of my mantra “don’t complain

In the spirit of sharing, here’s what my years of experience has taught me….whining about my suffering wasn’t helpful and lets face it no one really wants to hear about it, you might think they do, but trust me they don’t. This is a tricky one that can catch you out almost daily, especially if you live in Ireland as one of our conversation starters is generally “How are you?” or  “How was your weekend?”  we are asked this question constantly and I normally routinely lie about the answer, my go to answers are generally  ‘I am grand’ or ‘not to bad’

Now lets pretend I was to answer that question in an honest fashion what would I say?

If I was to be sincere today to that question what would I say truthfully…

‘Well I am feeling crap, I feel like someone has a steel bar and they are banging it against the middle of my back, while kicking me in the bum with a steel-capped boot. Then I have the overwhelming feeling of compression at the base of my head causing my neck pain, it is a crushing feeling of heaviness that I describe as someone drilling into my skull, I feel like I want my neck to be stretched out or maybe I could wear a neck brace to help carry this heavy load, which is my head. Moving up my skull and behind my left eye feels like a little time bomb is going to explode, a shooting squeezing feeling that seems to tick on and off. That’s not all, did I mention my annoying neuropathy, it makes braiding my daughters hair every morning torturous, my fingers and joints are so stiff and sore it is a constant reminder something isn’t right, and its not just painful it is very frustrating too, I drop my morning coffee cup routinely, a little extra cleaning just as I am trying to get out the door for school.

So to answer your question “how am I…”  Well, I am in pain and here’s a newsflash for you, I feel like this almost everyday, even on weekends!

Phew – even writing all that was a cathartic release.

However, you can see why this level of honesty could be a little over the top and a little too candid for a casual mid morning chat at the coffee dock or water cooler. So, for now, I kind of feel like this question no longer really applies to me. Regardless of how I am, I will generally lie and say, “Sure I am grand “

Isn’t is amazing how brave I am behind my keyboard typing out detailed accounts of my true feelings, however out in the real world I wouldn’t dream of ever saying anything like this to someone who asked ‘how are you?’, to be honest I don’t know that I would have the energy or even the confidence to say what I am truly feeling.

So for now, I will continue my inner mantra that has served me well ‘Don’t explain and don’t complain’ about my pain.

  • Orla

    February 13, 2016 at 10:34 pm Reply

    Really well said Andrea. I can completely relate…. it seems most ppl are just unable to imagine or understand this unless they experience it first hand themselves. And they find it extra hard to imagine if u smile… and u smile a lot, so I’m guessing u get that all the time. ☺

  • Pauline Burke

    February 13, 2016 at 10:55 pm Reply

    Hi Andrea,

    Such a completely honest account of the devil “chronic pain”. Don’t complain and don’t explain … a perfect explanation for the questions asked. I have really enjoyed reading this blog. It is so close to home in relation to how I feel about not communicating to some people I know, because they either don’t want to listen or I am tired explaining the same thing to disbelieving eyes. It is so great to have chronic pain brought out into the public domain. Thank you so much for all you do …..

    Kindest Regards,

  • Maria

    February 14, 2016 at 1:26 pm Reply

    Hi Andrea there is a good way to get out of any pain doing Taping

  • Gloria

    February 15, 2016 at 11:49 am Reply

    So glad to have found your blog Andrea. Writing down all you thoughts and sharing your feelings with your readers will really help you. Plus it helps others to know that they are not alone when dealing with ‘invisible’ illnesses. I’m almost certain of my condition but it’s the waiting for the official diagnosis that is very irritating. Once I know for certain what I am dealing with, I can move on and get to work on it. I’m living and breathing Louise Hay at the moment and I am addressing some issues that I didn’t even know I had. Affirmations are very powerful indeed. 🙂 I am looking forward to reading your book. I wish you all the very best with it! Now I’m going to check out where I can subscribe to your blog. Have a lovely day!

  • Niall Finn

    February 25, 2016 at 10:49 am Reply

    Very well said Andrea. When I am managing my pain reasonably well I usually reply to the “how are you?” question with. “Good enough”. When I’m not managing so well I answer “I’m Ok”! I’m very much with you on the “Don’t explain, don’t complain” mantra. Somebody once said that as soon as you’re explaining you’re losing. Maybe that’s out of context but it feels true. And as for don’t complain I believe you’re right there too. Once you start complaining it seems to give more power to your pain. My pain I should say. I think in a close relationship it applies also. I guess what I do is inform my wife when I’m extra bad, kind of to maybe excuse my narky behaviour. But complaining? What good does that do? Informing is so much better. Congratulations on your book. I know the effort required to complete something like that. I have a book on Amazon and though it’s out a long time I feel it’s not complete. I’ll get a copy of your book through Amazon and post a review when I’m finished. Again, well done!

  • Sonya Kavanagh

    February 25, 2016 at 12:52 pm Reply

    I couldn’t have said it better myself Andrea. I too have come to realize there is no point trying to explain chronic pain to people whom will never understand and probably don’t really care. The Invisible part of this disease is a hard thing to deal with, we make ourselves look good to feel good yet are in unbearable pain everyday and people will say ” but you look so well”.
    If we could just pass the pain onto these people for 5 mins so they can feel and have the knowledge of what torture we are going through. Looks can be deceiving. When people ask “How are you” I sometimes feel like its a trick question and I too would normally say ” Not too bad.


  • Bridget

    February 25, 2016 at 8:08 pm Reply

    I really enjoyed reading this. I actually can’t tell you the odd sense of relief I felt when I read that you too had experienced this “pain competition” with various people. There were times I thought I was going nuts trying to explain to people that a good amount of the people I’ve voiced my health problems to have gotten very defensive of their own painful experiences as if my chronic pain has somehow invalidated their pain and they must defend it. It gets really tiring.

    But what I really wanted to say is, I’ve tried this ‘Don’t explain and don’t complain’ method and I find it always comes back to bite me because people set unrealistic expectations for me. The fact of the matter is, I do have special needs because of my illness/pain, I can’t do/function the same as others. And I find if I go a long time without mentioning the pain and just say “yeah grand I’m fine” they almost assume I’m healed or something and will express annoyance at me when I’m forced to voice my limitations.

  • Ann Bradshaw

    February 25, 2016 at 9:41 pm Reply

    Like your comment – don’t explain, don’t complain – talking about it, to folk who have “rude good health” how could they possibly understand.
    I got your book on line, which was so easy. I’m going to the sun next week, and will read then. Thx for all the work and attention you have created for CP. xxxx

  • Kaleen

    February 25, 2016 at 11:11 pm Reply

    Wow!! Reading ur blog was like u read my mind! Ever have d wish t just let me b able t just touch ur hand so u cn feel my pain at its worst 4 just 5 seconds? Den ask me how i am! While i really wish i cud do this i prob wudnt ha! I have nerve damage to d bone of my upper gum.misdiagnosed for nearly4 yrs! 5 yrs of fucking Hell!! Numerous treatments…some experimental..7 diff specilists all over d country nd countless painkillers each stronger dn d lst leaving me like a junkie slurring my words nd dats not even takin d recomended dose…dey never got rid of d pain! So wat was d point!
    In d lst year iv taken paracetamol twice for my teeth! Dats Huge 4 me!! I dont wana b one of these people dat brags about not so getting managing! But i started Japa meditation 2 yrs ago nd its changed my life! For d better i owe my fucking sanity to it!! Im not better…never will b but at my worst i litterally felt like someone had 2 giant needles shoved up tru d bottom of my teeth up tru my gums nd my legs wer dangling!! Or dey wud burn up d bk of my nose nd under my eyes..nd i mean burn! I eat with plastic cutlery nd lookwarm food only because d food heats up on d fork…iv gotten up from d table at xmas dinner crying because i cnt take d pain of normal cutlery scraping d plate! Even tho everyones trying not to..q eye roll! All my family have plastic cutlery in their hses 4 me…nice bright picnic ones! Ha I wear scarfs cold wind air dey all set it off! Im just more mindfull of it now. I still have t wear a splint at night nd always will t stop grinding im in bits if i dont.
    Look just dont give up! Iv had a specilist give up on me because der was nothing more he cud do 4 me nd sent me t a pain anesitist…dont take it as d end! I found another orofacial pain specilist…Dermot Canavan in Dublin!! He is Amazing!!!! He saved my life. He gave me bk my life him nd Japa x
    Hope dis helps someone x

  • NikNak

    February 26, 2016 at 11:48 am Reply

    Wow… I always cry (even though it hurts) when I read the accounts of others that are going through this. I identify with every word. Not being understood and dismissed as a needy, miserable drama queen for the majority of my life is deeply painful. I’m the only one I know with this condition and nobody around me apart from my son actually gets how battered and exhausted my little old brain is! I wish a miracle would happen and we all find relief soon xx

  • Eileen Hopkins

    March 14, 2016 at 3:00 am Reply

    Hi Andrea,I loved your book, I could Identify with many of your experiences.One big thing for me was the side effects of the medications and with some,more potent meds,the dreadful withdrawal you had to experience when stopping a med especially if you had been taking it for a while.
    I’m now finding meditation ‘ my best friend’,the Breathworks approach looks atmindfullbased stragies for living with chronic pain.
    I hope to go on and train to teach it later in the year,my background is in Nursing but I have had to retire last August due to my pain @ 51.

  • Kate Kerrigan

    March 14, 2016 at 11:09 am Reply

    Go Andrea! I’ve just completed my weekly Mail column where – once again – I ‘give-out’ about my chronic pain. Nice to have the cathartic steam-valve of writing about it from time-to-time (especially when there is no-one to pain-compete with you) but I related so much to everything you said. Thank you so much for speaking out! Nice to know I am not the only person writing about this problem. As I say – chronic pain won’t kill you – but sometimes you wish it bloody-well-would! I LOVE your positive attitude. Moaning about my pain is such a negative, pointless, negative pastime. In truth, all I am ever trying to do is elicit sympathy from strangers (as you said – competition) or worse, loved ones who are, frankly, sick to death of me by now and at best -I will simply drive to painful worry. Talking about pain is such a useless, negative cycle. Chanelling you right now and rushing out to buy your book – thank you again. Kate Kerrigan – author and Irish Mail columnist (Wednesdays in Life&Soul section) xxx

  • Alma Browne

    March 15, 2016 at 9:53 pm Reply

    Well said Andrea, I’m so glad next month Is chronic pain awareness week (April) I have Trigeminal Neuralgia myself, and honestly I find the total lack of education and awareness and empathy towards patients Is appalling, from both people and medics alike, It’s time to create this and stop the terrible Isolation people living with chronic pain have to endure, It’s about time this debilitating Illness was acknowledged and respected and given the attention (which Is long overdue) It deserves.

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