Dignity….whats that about anyway?

So last night I got to thinking about coping with unwanted changes in ones life…..well, ok, unwanted changes in MY life!  And I got to thinking about how “well” I think I’m coping with those changes.  Turns out I decided I was not coping in a “dignified” manner.

Have you ever been in a situation where something that is happening to you is really really affecting you, and you’re totally struggling with it.  But you know it would be undignified to talk out loud about that struggle, because you would appear weak, or seeking attention, or just making a fuss of something others may consider insignificant.  So you hold on to it…and keep on feeding your sad and negative thoughts back into yourself…and then some more…and a sneaky wee part of you that gleefully wants it all out keeps encouraging you to keep re feeding it back inside because secretly you really know what’s going to happen…until all of a sudden it explodes out into a huge mess….all a bit like that explosion scene involving Mr Creosote in “The meaning of life”.  (Don’t watch that clip if you are at all squeamish….it’s pretty gross in a satire-ish kind of way!)  And anyway, next thing….hello…..all manner of that dignity and strength you strove to emulate, well, that just went down the gurgler didn’t it?

Conducting oneself in a dignified manner.  It’s something that is seen as a positive attribute, and is rewarded with respect from others.  How often do you hear about people who have been really sick, sometimes dying, and people say “you know, she never complains at all, through all those treatments….she just puts up with so much and is so strong”.  I hear that quite a bit.  Do you?  There seems to be a special honour that goes with those comments, a reverence of that person, perhaps even an implication that we should all be like this, a state to strive for.  Well, that’s what I  hear anyway.  “Such a STRONG woman, so STRONG ” – the emphasis goes on that word, STRONG.  It’s the way to be….people like that, they’re comfortable with it.

So I notice I try to emulate this since being strong and dignified in the face of adversity is clearly the way to be.  But you know….I just end up cocking it up.  Because I value being genuine and not a false person…in fact being genuine and real are qualities that I hold very close to my heart. And being real “out loud” about grieving for a life that isn’t actually going to be what you worked hard towards and expected doesn’t feel very dignified.  Now, don’t get me wrong, I’m not looking for sympathy….”oh you poor thing, that must be awful”.  I think that’s where I lose my dignity actually.  I’m not looking for the “block out” technique…”Don’t be silly”.  That’s the one people say when they feel powerless to help and just want your grief to go away, thus negating it all together, leading to a further loss of dignity.  Actually, what I think is useful for retaining dignity is facing the grief head on and being able to express it without feeling like it must be stifled or packaged into an acceptable presentation.  It’s my issue, I would like to feel more comfortable about doing this, and perhaps that’s the secret to being dignified about it all?

I notice that when people ask about scleroderma I often be sure to add that they treat it with a type of chemotherapy.  That word….chemo….I notice how I like to throw that word into the conversation we are having about scleroderma to make an impact, because everyone knows CHEMO treatment is SERIOUS.  It’s quite a sly and sneaky thing to do, not at all genuine and upfront really.  I think what I’m really trying to say is “I’m sick.  take it seriously, it’s serious, it’s changed my life! Scleroderma is real and hard to live with every day”.  It’s a fish hook designed to get people to have a reaction I’m looking for, so I get to have my say about how scleroderma has affected my life, whilst remaining dignified and strong, someone to be admired for calmly mentioning it during conversation.

It’s time to find a new approach.

I think I’d like to find a balance between staying real and genuine, and retaining a sense of dignity whilst not pulling any punches about how much I struggle.  I don’t want to suffer in silence thus becoming an island and ending up in a dark lonely place, and getting into a cycle of feeding myself the grief until it explodes out.

I’m sure there is a balance.

No more Mr Creosote…..no more.  I’m sick of mopping up the mess afterwards!


5 thoughts on “Dignity….whats that about anyway?

  1. “I notice that when people ask about scleroderma I often be sure to add that they treat it with a type of chemotherapy. That word….chemo….I notice how I like to throw that word into the conversation we are having about scleroderma to make an impact, because everyone knows CHEMO treatment is SERIOUS.”

    Oh yes. I’ve noticed I’ve started going this too. I have Dysautonomia, which means absolutely nothing to 99% of people I talk to (even most medical professionals). But when they find out that, because of it, I have a pacemaker, at 26 years old, suddenly big lights turn on above their head. This is a SERIOUS illness. This illness has a BIG impact on my life. They know nothing about Dysautonomia, but pacemakers they can relate to. It’s like a touchstone for them, a marker.

    Part of me is relieved that, after 12 years of this invisible illness, I now have a physical “thing” to use to help people understand. Part of me is ashamed and a bit angry. What about all the people with chronic illness who don’t get a relatable, easily understandable treatment or medical device to point to?


    • Absolutely, must be awful for those without a relatable medical touchstone. In fact I often think about all this when I get out of my car which now has a disabled parking sticker. I’m so conscious of people looking to see where my medical prop is….the wheelchair etc. It’s like you have to have something they can understand as you say, a marker. I can see how the pacemaker would turn on those “oh yea, I get it now” lights too.
      Sending you lots of warm fuzzies Bear x

      Liked by 1 person

      • Yes, yes! I have a disabled parking sticker too, and have been verbally abused and physically intimidated by people who’ve seen me getting out ‘looking healthy’.

        When I park my mobility scooter outside the local grocery store, it takes all my willpower not to limp into the store. I don’t need to limp – but I feel like if I did, all the people staring would understand better why I just turned up on a scooter made for old people. They can’t see how tired I am, or that I faint sometimes, and so am not allowed to drive a car.


        Thanks for the warm fuzzies 🙂
        Sending some right back ❤


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