Monday, 11 March 2013

But you don't really care for music, do you?

(Have you any idea how nigh on impossible it is to find a non vomit-inducing friendship picture? I gave up. have a dog with an odd choice of headwear instead.)

And so I come round to yet another particularly difficult post. Channelling and yet at the same time making something constructive out  of anger and pain is an interesting experience for me, so I ask some indulgence if this entry is not quite so elegant as usual.

I’m going to take a less-than-wild stab in the dark that every one of my fellow Spoonies reading this has lost “friends” in the journey from onset to diagnosis and beyond.

Why am I using quotation marks? I’ve come to accept I’m a little harsh in my views on this (I’m a product of my experiences, as are we all) but to my way of thinking anyone who will let you go over something like illness was never a friend to begin with - not in the truest sense of the term.

I was often told growing up that if you could count true friends on the fingers of one hand, you were doing something right and could count yourself immeasurably blessed. However I don’t think that stops it being painful when people either disappoint or turn out to be different from the person they’ve led you to believe they are.

My social circles have come to be almost unrecognisable in comparison to before falling ill, both in negative and positive ways. Some people I wasn’t close to and shared merely a passing acquaintance with have stepped to the fore and become true companions – I’ve made two friendships throughout this process in particular which have the flavour of the lifetime about them, and I wouldn’t swap that gain for anything on this earth.

However, I have definitely lost people who I previously thought belonged there.

In chewing some of this over, it came to me that those who can’t cope with something like a chronic illness aren’t necessarily bad people. After all, everyone has something that they are just unable to cope with, something that remains ineffably incomprehensible to them. Some people just cannot deal with sickness when it isn’t transient, and I don’t think they should really be judged for that any more than anyone else for their particular quirk. For some people, compassion for the same problem after more than a couple of weeks just isn’t natural. They tire of asking the same questions when they will receive the same answers.

In some ways I can actually understand the predicament. For the first six months or so I flailed about completely unable to deal with what was happening to my body. I drew inwards, I lashed out and if I’m brutally honest I wasn’t coping well at all. Acceptance comes to us all in time however, and part of what helps us reach that is having friends who close about us and offer a quiet word, some of their time or sometimes even a shoulder to cry on.  

At my absolute lowest (towards the end of last year) I was in a very dark place indeed. Diagnosis seemed all but impossible and disaster was striking elsewhere within my family. If you believe the old adage that these things come in threes, my falling ill was but the first and by far the least of the three.  I am not by nature someone who reaches out very often, but I started to try then. I’d reached a point where coping by myself wasn’t working, and I (like many before me I expect) reached to some of the wrong people.

What I received in return was cruelty and bile from unexpected quarters, and those wrong people showing their true colours in backing the abuser. Accusing me of enjoying being ill because people pitied me, of making the most of the opportunity for attention and attacking every which way I had sought to make sense of my new normal was considered by them to be “just giving advice”. The fact the “advice” came with a plea to not respond and to not reveal the abuser’s identity or tell anyone else about the message seemed lost on them. It was not lost on me, however.

Why am I mentioning that example? Well, I’ve seen it happen to too many other people to not at least offer empathy from similarity. More importantly though, using unavoidable ill-health as an attack makes you the lowest of the low in my eyes – I will never, ever change that view. How cowardly, and how truly pathetic.

The anonymity plea counted on my being too hurt to do anything in response. It didn’t count on my much more forthright and rather angry partner stepping to the fore and making sure it didn’t go unanswered. Fireworks ensued, more true colours were shown in further unexpected quarters, and I set about the business of healing the damage and rebuilding the way I thought about the bigger picture of my situation.

In short, the quotation marks I used above suddenly became permanent fixtures in my way of thinking.

What nobody had counted on (including me) was my mentality and previously unplumbed depths of resilience. Kick me when I’m down in the right spot, and you unleash my seldom-seen temper. I didn’t direct it at anyone, but instead used it as fuel to pick myself up and carry on with renewed vitality. I made myself a nuisance with the NHS, fought tooth and nail with them for every inch of the path to knowledge and as a result received my long-awaited diagnoses. I re-assessed my situation and took some very large and frightening steps in the name of my long term health – most notably, I left my job and relocated to live with my partner without the promise of work, something the me of two years ago could never have imagined doing. Making the decisions was liberating in itself – I firmly believe decision making to be good for the soul.

Importantly though, I made rather large changes to my social circle. It sounds like a minor element, but for someone who is as non-confrontational by nature as I am it demanded some real soul-searching and courage.

I removed everyone who wasn’t helping me. I cut loose every last person who had brought me down or made me feel bad for having my illness, and I rid myself of every single toxic relationship I had subconsciously tried to hang on to.

Diagnosis opened my life up again, and I wasn’t going to waste the opportunity to make it a better environment for me to cope within. The difference once rid of all the toxicity was truly amazing.

I really do urge people (ill or not) to let go of any toxic people in their lives. It’s a good life lesson in general, but it makes a tremendous amount of difference. As a sufferer of chronic illness of any kind you have quite enough to deal with without worrying about the troublesome opinions of people who don’t take the time to understand. I’m probably sounding more than a little harsh – but ridding yourself of people who are unhelpful or damaging isn’t something to be ashamed of. I came across a very nice quote to this effect recently:

You don’t ever have to feel guilty about removing toxic people from your life. It doesn’t matter whether someone is a relative, romantic interest, employer, childhood friend, or a new acquaintance — you don’t have to make room for people who cause you pain or make you feel small. It’s one thing if a person owns up to their behavior and makes an effort to change. But if a person disregards your feelings, ignores your boundaries, and continues to treat you in a harmful way, they need to go.
-          Daniel Koepke

Most importantly, in one way or another the abuse was what started me on the road to eventually creating The Retired Bridgeburner and putting together my small attempts to help others with some humour and honesty about my experiences. I am beyond words in trying to capture how pleased and honoured I am by the nature of the response to this blog so far.

My overall health is now improving in as much as it can for having that much healthier environment about me. I have found my own particular brand of quiet courage and used the find to build some self belief. I’m discovering new limits and I am in many ways a wholly different person from the healthy me of two years ago, and whilst I have railed at some parts of the process I regret the changes not at all. I entered a somewhat painful chrysalis and emerged a deceptively strong Fibromite butterfly. 

In mentioning the negative, I must of course shout from the rooftops about the positives. I used the phrase “immeasurably blessed” further up, and I apply that in every sense to my own situation. I have an incredibly patient and understanding partner who looks after me (and buys me cake – what a winner!) and I have some  truly fantastic friends, both ill and healthy, who make the entire process so much easier to bear. I was extremely lucky in that throughout the hospital process and numerous procedures I had people to turn to who had experience of the same and they were good enough to offer their time and reassurance. We have some bowel issues in our family so I had a very refreshing (if somewhat earthy) take on these things with which to deal with it all. A little bit of toilet humour can be surprisingly helpful!

However, most important in all of this has been those incredible friends. Their understanding, compassion and patience is utterly invaluable and I could never find the words to thank them enough. You all know who you are anyway.

I appreciate however not everyone has the luxury of understanding companions. To them I would say if I could climb out of the dark place I was in and find strength to cope, so can you. We all have depths of resilience, and we’re all strong. What else can you be when your body demands so much of you? You can do it. I promise.

The fact remains that in this game between me and Petunia, there’s only going to be one eventual winner.

It ain’t you, sweetheart. 


  1. I can completely relate to this blog and isn't it oh so painful?

    I myself received absolutely no support from not one bunch of work colleagues at 1 job when I struggled to cope with my worsening health (I had no diagnosis at that time) but I moved on to another job only to experience EXACTLY the same thing again when I developed hyperemesis that required hospitalisation throughout my pregnancy.

    Not only was there no support from people I had come to think were friends, but I had ridicule, back-biting and even was unfortunate enough to read an email exchange between 2 colleagues talking about how pathetic I was and how I should be sacked for my time off ill... how they were sick of hearing about it. This was the reason I left the first job. I couldn't look these people in the face after knowing what they thought about me.

    The second time around, I experienced nothing short of bullying from my actual manager.. a horrid woman who should never have been in a position of authority. When I left this job through ill health, I actually logged an official complaint against her. It was looked into and the outcome? We recognise things happened which shouldn't have, things were said about you publicly in the office in your absence which shouldn't have been, speculations were made about your health which shouldn't have been... what happened? Bugger all. They said the manager in question would be retrained. She's still there.

    I have also experience the same thing in my circle of friends, but not so much where they were nasty as they just don't 'get it' and think I should be fine to do things and just don't understand when I can't. Its almost like I feel they think i'm making excuses or lying... maybe thats all in my head after my previous experiences... I don't know.

    What I do know and what I have learnt is that a chronic illness like fibromyalgia is bloody difficult to come to terms with and to deal with on a daily basis, but what is much, much more difficult to deal with is the people around yous reactions to it and the way they deal with it and you. That's a sad state of affairs really.

    Again, fantastic blog.

  2. I too can relate to your post. When I became ill with Fibromyalgia 5 years ago I had to cut loose one friend, who was also a neighbour. I really saw her ugly side when I became ill, and realised our friendship had been all one way. My partner was brilliant and quickly managed to move us from a 2nd floor flat to a bungalow near his parents. You really do find out who your friends are with chronic illness.

  3. My gosh, I'm really sorry to hear of both your bad experiences :( it's horrible but I do think in the long run the "finding out who your friends are" does you good - if only because you found out sooner rather than later.

    Wishing you both many spoons :) x