difficult people, difficult me .....

HCV – both the disease and the treatment – has hugely affected the way that I relate to people and the world at large. And, on a very profound level, the way that I relate to myself.
I feel that I have stepped out of everyday life and into another zone – beyond the reach or understanding of many friends and family. People begin to quietly drift away. Others step forward briefly and offer advice, wisdom (maybe platitudes) which sound to me like full stop or an avoidance, rather than a real dialogue. Of course I have to accept that. If people outside of this experience cannot connect and need to distance themselves, then banging on their door or demanding greater awareness will only cause further fear and discomfort – for me perhaps even more than for the other person....
So it can get very lonely. Who am I now? That’s the lost voice chanting inside, for many of us. So much is stripped away – depending on how hard the symptoms hit you at different times. we may loose;

our working life and career; family support and interaction; friendship, companionship, community and social life; primary relationships, even a marriage; our appetite and our hair; our mobility and opportunity for simple leisure pursuits and past-times; our concentration, comprehension and even simple ability to distract ourselves (from pretty constant discomfort) and our sense of perspective, sanity and proportion.
Anchors, familiar routines and interactions, any basic sense of flow or rythm in life – all gone. We experience a feeling of disintegration, alienation, loss, loneliness. And still, within that empty space, we need to somehow find the courage and resourceful to remain positive, brave, optimistic. As the rest of the world will often tell us – on those days when we do take the risk to reach out and tell someone else how it is.

A dismissive and curt “you’ll come through ......” from a friend or family member who you thought was a special part of your life; followed by months of silence and their conspicuous absence. I guess we all know the hurt and loneliness of that one. If only that person could for a moment imagine the difference it might have made if they had simply been able to say:
“I am listening. “ I don’t know how to help but I do care.” Or “I am sorry I don’t always know how to respond ...... what do you need right now?”
And there are times – for those of us actively in touch with other Heppers – when even contact people within the Hep C Community may make us feel lonely, confused, discordant. Generally, with all the good and supportive intention between HCV patients, this is usually down to crossed wires rather than deliberate bloody-mindedness. And to the reality that we’re all sick and struggling and with scrambled circuits. (actually, given the stressors, perhaps it’s a testament to the strength of this community that we don’t fall out more often....?-)
Illness and treatment has been a very isolated experience for me and that isolation has affected me in so many ways. I am sure many others will understand this. For a general self-sufficient person – I certainly have discovered that there is another very fundamental instinct within us that needs people, community, company and belonging.

Unfortunately, through this tough haul battling the virus; it is the nature of the beast that we are also going to become confused, disrupted in our thinking and ability to interact, and just plain mixed-up. So this may result in times when we alienate others.
In my case, generally I have had pretty good social skills and am a sociable being my nature. Never in my life have I experienced such a time of discord and loss of harmony in my relations with others, individually, and with the world at large. A fair amount of it is down to the perversities and complexities of human nature; some of it is down to my own agitation and emotional disruption on treatment. Sometimes I have confused or pissed off other people (with no intention to do so.) Or at other times, I am intense and full of highly charged psychic energy and some people just can’t handle me. On one level I am totally accepting and detached about this and on another level it is sll very painful and I have no real insight or conclusions other than it demands huge levels of absolute faith on a daily basis that:

*You are not loosing your spirit and basic identity; this too will pass...
* you forgive yourself and accept your struggles as part of the experience and not a reality of who you basically are
* you may re-evaluate how you understand your place in the world, your relationships and friendships, and even your sense of trust in life, self and others and this process may feel like your heart is open and raw and wounded. But you will heal if you believe you can and ultimately you can forgive: other and – again – yourself.
* you choose to believe that you can have the grace to look honestly at the harshness of life at times, yet still hold on to the hope and the beauty and the kindness where it is given; and to hold on to each moment of that to nuture you.
* I am not my illness; I am not my symptoms; I am not my pain or anger or confusion. I am simply me, living through a huge challenge and doing my best each step of the way. Along this path, I may have been hurt, and perhaps hurt or confused others at times. We are all human with all our strengths and weaknesses. we can choose to approach each day as a potential new beginning and to believe in community and kindness.
With love, eva (eva day)