I'm not alone
I'm sitting here looking out to sea and all I can see are gulls, waves and the odd ferry. You can feel quite cut-off when you live on an island and I suppose that's how I felt when I was diagnosed with HepC. I felt quite alone even in the room full of people. It wasn't made any easier by the local Consultant who broke the 'bad' news - he mentioned the stigma attached to the virus (hate to call it a disease...)and said that I would probably be better off not telling anyone.It made me feel unreal. I felt utterly cut-off from real life, from my family and friends, from everyone else in life. It makes me wonder how other Heppers are coping here......
All I can say is thank goodness there are wonderful Bloggers out there who have helped me in one way or another realise that I am a real person again, living in the real world. I would never have considered having treatment without reading about their journeys and their various hurdles and how they overcame them. Thank You!
It really goes against every grain in my body to keep this a big secret. I can't pussy foot around trying to pretend that I'm the same 'all singing, all dancing' full of vim and vigour person who now goes around with a paper bag on her head and doesn't drink anymore. I have told one or two close friends and I expect I shall 'come clean' before I start my treatment - perhaps even do a newspaper article on it. Maybe that way, it will help establish some sort of local support group.Don't know though....sounds a bit scary!
All I can say is thank goodness there are wonderful Bloggers out there who have helped me in one way or another realise that I am a real person again, living in the real world. I would never have considered having treatment without reading about their journeys and their various hurdles and how they overcame them. Thank You!
It really goes against every grain in my body to keep this a big secret. I can't pussy foot around trying to pretend that I'm the same 'all singing, all dancing' full of vim and vigour person who now goes around with a paper bag on her head and doesn't drink anymore. I have told one or two close friends and I expect I shall 'come clean' before I start my treatment - perhaps even do a newspaper article on it. Maybe that way, it will help establish some sort of local support group.Don't know though....sounds a bit scary!
8 Comments:
Tell the world, Tink!
Anyone who can't live with it needs two paper bags! (Second one in case the first one splits!)
You have a low viral load and every chance of a cure.
Good luck with the treatment!
Martin
By
MartinB, at 9:00 pm
Hi Tink,
Personnally I have never really come across a stigma associated with hep c. I am fairly open with people about my hep c and the fact that I am on treatment. Having said that I do think that there is a stigma associated with this virus, whenever I first tell someone about my hep c I invariably make the point of telling them that I got it when I was 11 years old through and NHS treatment.
Ultimately I don't think it matters how you get the virus, some people will have got the virus because of unfortunate decisions they made 20 years earlier in their lives, many of these people have probably overcome great difficulties and now lead normal lives only to suddenly have this thrust at them.
When it comes down to it the choice about who to tell is yours but you may be surprised at the support you get. I am one of three managers responsible for running the IT services at my University, one of the chaps I get on with really well, the other chap I have never really had much time for as professionally we have some differences. Since starting treatment though he has provided me with one of the best sounding boards at work for my problems and has given me really insightful advice about my treatment and feelings about it. I would never have expected this type of support from him.
I haven't done a newspaper article, though I have done local radio on behalf of the haemophilia society. I also attended a lobby of parliment.
Good luck
Jonathan
By
Jonathan Colam, at 9:49 pm
Hi Tink
(Count down to your rollercoaster journery)
Good luck with your treatment and I believe you would be fine on treatment with the support from your husband, family, friends, nurse/ doctor and also the inner strength you have within you. All this support will guide you safely through treatment. Oh not forgetting your new friends the Bloggers.
For your hsband
Don't forget to spare a thought once a month for your husband who may be feeling and going through the same emotions as you do.
By
Anonymous, at 10:41 am
Thank you anonymous! I havn't mentioned Andrew, my husband very much but he has been right here beside me - when I was first diagnosed here on the island and flying to London to see the Professor - he was always right there to bounce off!
I have been exceptionally irritable over the last few months and he has put up with that too. Sorry Andrew, I feel so guilty that I have done this to you!
By
Tink, at 12:29 pm
Hi Tink,
When I first told my sister in law about being HCV+ she was anxious in case my other sister in law would use it as an excuse not to bring her children to visit the family and told me not to tell her. (I think she still doesnt know). You can imagine how that made me feel.
I was diagnosed 5 years ago but it did take time for me to get used to the idea of being contagious. I initially told my boss and my immediate team members, and our department First Aiders so that they could take precautions and keep themselves safe if I fell or passed out etc. I always carry plasters and wipes in case I get leaky.
I told my closest family members and friends.
Most of the people I work or come into contact with know now as I'm quite open about it.
I probable got the virus from IV drug use in my youth. I cleaned myself up 25 years ago, went to University as a mature student and have been working full time and looking after the older members of my family since then, I dont think I have anything to be ashamed of. My experiences in the past have made me who I am today.
I felt very alone when I was diagnosed too. I think being open about this is the most useful thing I can do as so many people are about to find out that they too have the HEPC virus. But that is my personal choice.
What ever you decide about 'coming clean'(and take your time making the decision)should be what is right for you. After all your blog will be a source of material if you decide to write about it later.
It's a good sign that you are thinking about all this now.
To partners, wives and husbands of HEPC bloggers:
We crave your indulgence if it seems that we are obsessed, it is the sheer relief of having someone 'in the same boat' to talk to and compare experiences and share advice with. Knowledge is power and we need every bit to get through this. (And a sense of humour)
Wendy
By
Wendy Kay, at 12:54 pm
Hi Tink
Your welcome!!
I would try and keep up with your blogg during your treatment. When you start treatment do not say you have 48 weeks of treatment, (it make it seem forever). Just say to yourself I have 48 injections ( 1 down 47 left.
smile
By
Anonymous, at 10:30 pm
Hi Tink,
So far, treatment not unbearable for me, but definitely not what I'd like to be doing forever. Do my injections Friday night and the weekend is pretty much a write off, but I'm fine for work on Monday. That being said, have only done 4 shots (20 more to go - have genotype 3)
I've told my close friends and family. I work in health care and have told a limited number of people I work with (our occupational health dept., my employer and a close peer).
My husband and sons have all tested negative and are extremely supportive. I've not been so much raging at them on treatment, but I have been acting as if 1/2 my brain is missing due to the "brain fog". Recently upped my Vit. B complex dose, which seems to have helped. Also am quite active - walk about 1-1.5 hours daily and do about 45 minutes of yoga in the morning and at night.
I wish you all the best whatever decisions you make regarding treatment. Great to have found your blog! Although you're on an island, you're certainly not alone!
Sue, Toronto
By
Anonymous, at 1:33 am
Hi Sue,
God knows how people coped prior to the internet! It does make it so much easier to know that you are not out there on your own so thanks for your comments. It's not so scary knowing what I've got coming up when I can hear from people like yourself. Best of luck with the treatment!
ps my in-laws live in Ancaster...
By
Tink, at 7:05 am
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