Week 18 - To Colette and Anyone Else
Hi Colette
I have read the four comments you have posted on my blog over two days this week.
Clearly you expect people to be sensitive to your plight, your struggles and your feelings - but you display no empathy to someone who is on ‘pegylated interferon and ribavirin’ treatment and has their own struggle with the virus.
You have written to me demanding explanations and comments on haemophiliac issues as if I am “the campaign” or ” the government”. I find that insensitive and offensive.
I can answer comments from my own experience and understanding only. My understanding of the Awareness campaign is that it is targeted at people who may be at risk of, or not yet diagnosed with, Hepatitis C. It isn’t about people already diagnosed and their situation. Your comment that the campaign is about drug use and shared needles, not haemophiliacs, is inaccurate and misplaced.
I think it is also divisive. It implies that some groups with Hepatitis C are more worthy or “less to blame” than other groups. I believe none of us deserve to have Hepatitis C - drug users or anyone else. If we want the stigma about Hepatitis C to be removed, there is no point in groups within that community stigmatising each other. In insisting we recognise your specific plight is worthier, you denigrate the rest of us with Hepatitis C. Actually none of us deserve to have HepC, no matter how we caught it.
You have taken space on my blog to campaign for your own cause - issues very specific to yourself.
However, it is my blog - and this is Why I Have Set Up This Journal:
1. So I can track my own progress through the journey of my treatment, noting how things are changing for me over the year.
2. To provide a first hand account for others who may be recently diagnosed HepC+, those who may suspect they are, or carers and relatives, of what it is like to go through treatment.
3. To raise the profile of a somewhat hidden and overlooked minority group within the HepC community - those who are not injecting drug users.
4. To challenge the stigma faced by all the HepC+ community - the underlying assumption that we have caught HepC because we are drug users and therefore deserve the disease as retribution for our ways.
While your own issues may be worthy of a campaign - this blog is not the place for it. Own your beliefs - and set up your own site!
I welcome comments on my blog and enjoy a dialogue with people who want to use the space for the reasons I have listed above. And my experience is that, overall, people do want to use it on that basis.
I do not welcome comments from you, or anyone else, who wants to use it for other purposes. In future, I will remove comments - from you or anyone else, which I think fall outside those parameters.
Ron
March 19th, 2005 at 5:30 pm
Nice 1 Ron!
March 19th, 2005 at 5:32 pm
Hi Ron,
I think this is a very fair posting and be assured that not all haemophiliacs believe that they are worthier of treatment for hep c than others.
One of the things I could never understand is the idea of being stigmatised for having hep c. I have always been open about having hep c, and been open about how I contracted it, people tend to feel sorry for you rather than stigmatise you when you can explain that you have a virus because a doctor injected you with bad blood when you were 11 years old.
I cannot imagine being in the situation of having to explain when I was younger I was a drug users and as a result nopw have hep c, I think that to admit this is far harder and must take great courage. I know some of the bloggers here have turned around their lives, given up drugs, and only now years later are having to re-live a part of their lives I suspect they would prefer to put behind them.
Ultimately it does not matter how people got this virus, it is far more important that we are all treated appropriately and given every assistance to either rid the vrius from our bodies or manage the virus and live with it
Jonathan
March 19th, 2005 at 6:55 pm
Hi Ron, just wanted to say how well you looked in your photos. Judging by them I won’t be needing that paper bag after all!
Very best wishes
Tink
March 20th, 2005 at 12:45 pm
Well said Ron - I totally agree. I think also, however, that there is the very serious issue of discrimination and stigma which is being addressed, and I believe (a very personal comment) that this is why the campaign funding is so poor compared to other campaigns. I believe that this may also relate to why hep c is such a ‘poor relation’ in professional communities. While I agree with your point that no-one deserves this, I can understand the frustration and anger. This reinforces the need for us all (from whichever walk of life, and however we contracted hep c) to work together and to make the campaign a success. Maybe then all of us can get the quality of treatment and support which is necessary.
Everyone seems to have a story to tell about dissatisfaction and outright anger over responses to Hep C - not least myself (after a great week last week when I was told I would start treatment, I got up on Saturday morning to find yet another letter about further investigations needed. This now resides on the floor in a screwed up heap. I suppose I will pick it up and iron it at some point). However, the solution to individual problems is to share them, to co-operate and to use the campaign for its purpose - raising awareness.
I have said before that my professional life was devoted to breaking down prejudice and ignorance, and I stand by that.
I guess ‘united we stand’ might be the best cliche to use - it is past divisions and stigma which have kept hep c in public darkness and professional twilight for far too many years.
March 20th, 2005 at 12:57 pm
A lot of very famous and influential people used hard drugs. Queen Victoria, Sigmund Freud, Samuel Taylor Coleridge, William Wilberforce (campaigned successfully for the abolition of slavery) etc, etc…… I see no shame in being associated with such people.
March 22nd, 2005 at 4:29 pm
Ron, Everyone and everything that comes into our lives is our teacher and our guide. I am sure your are aware of this. I admire you and I admire anyone who takes this healing journey. The healing comes in many areas of our being if we let it. I have noticed a pattern with those of us with Hepatitis C we are often angry and very controlling and we draw that energy around us. Hepatitis C has been one of my greatest teachers. I believe we went through this shame stuff with HIV lets not get the idea that we are somehow differant because of our mode or recieving this teacher. I like your blog it is very well done and informative. Being in the states it is interesting to hear how the British are dealing with this. I have been a social worker for 20 years LCSW. Do they have Clinical social workers in England? Take Care Sending healing energy your way. Diana