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What has been the most frustrating about... - Hepatitis C Trust
What has been the most frustrating about being diagnosed with HCV?
Written by
CalvinHU
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29 Replies
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Nothing being done about it!!! Lack of support and lack of information passed on from the health services!! Just being left in the dark with your mind overthinking. Not healthy!!
I find it frustrating that I have to keep it quiet as there is a stigma attached to having Hep C. I am cleared now but according to some sites I visit, the virus is still there but just not in such large amounts that it shows up in tests. Finding out the truth is nigh on impossible. I have read of all the side effects of interferon, which I had, and I definitely have some, such as the painful joints and tiredness but my consultant told me there wasn't any evidence of such. I would love to know the real truth but I just accept it now and keep quiet about being cirrhotic.
15years ago,my g.p. At the time said there's a hope of treatment BUT.....there's a long wait ,treatment is for 6 months there's lots of unpleasant side effects then ...it is not always successful! so I said yes at the time,ille wait ,I never heard anything about it.i must admit I wasn't banging the drum about it as I felt too ill..and the only information I heard about the interferon was that it was likened to chemo and you had 6 months hell for nothing most of the time.
It did work for me though. It wasn't hell for me personally and at first it didn't bother me at all but the effects were cumulative and towards the end of the 6 months i was counting off the days until my last day.
I think they were trailling for years they now know it does not work for certain genomes and the ones it did was dependent on the viral load the thing is they know now and the treatment is just like popping a multivitamin it's all about £££££ not helping people I'm one of the ones it wouldn't of cured genome 3a...
I have said in a earlier post that I have been fortunate with my health team, which I have, especially regards monitoring me & keeping me up to date with treatment timelines and eventually getting me on Harvoni. But I do feel a bit frustrated when I’ve tell them about side effects I’m having and they are not interested. I don’t want to be a downer, and say I’m having post side effects, it makes me feel so bad because I know how many people are waiting to be treated, and I know how lucky I am to get treatment and to have cleared the virus. I want to be able to say, I feel fabulous, but the truth is that I don’t. I just wish there was support and information even if they said to me ‘ look your going to feel unwell for quite a while, but you will get better eventually’. I could handle that. If it wasn’t for other people’s support on various sites including here, I would feel really negative and alone.
Instead it’s blank looks all round, go to your G.P. We will see you in 6 months. Of course my poor G.P knows even less about post side effects, but she at least did say that my body had been through a lot and it would probably take time, which I appreciated. Although I’ve worked that out myself and hoping that’s the cause, it’s nice to hear some kind words of support from a medic.
I try to be positive, I have seen slight improvement, but I think it will be at least another year before I feel better, judging by the pace it’s going so far.
It’s been a year next month.
Sorry about the rant guys. Hope you are all having a good day.
Best to all.
K
Rant as much as you like, that's why we're all here!
Thank you. K
I think your right going forward will take time for our body and mind to get better alls we can do to support this is eat and drink well as a start then make sure you surround yourself with decent people.oh and don't forget to clean behind your ears..🤓Do feel for the people on here not yet being treated though they have to demand a place on the hospital list firstly then ring on a weekly basis to see where they are on said list,like Simon has said in posts access mental health services to push things along .........
Yes, I agree It’s bad enough people are not getting treated, but to not to even be monitored or have any support at all, outrageous.
Thank you Alan, I will, especially cleaning behind my ears. Lol
K
I'm yet to get a cure and my go does nothing. So sod them I'm of to india for five months to try and sort my head out and way of thinking hopefully come back more positive and determined to get the help and support I need.
Hi Karl ask to change your g.p. The next one you get might pay more attention I find women g.p,s easier to talk to.you need to see H.c.v.specialist to start ,if you haven't already.good luck.
2nd gp and both been female. Was asked to contact my specialist who I have seen previous the only one I have seen. Yet 10-15 messages and emails still no reply from them. Like I say no support!
See what you mean,looks like you need to put a complaint in ..
I get what you're saying. I too had a great doctor and waited for the drug to come along that would clear the virus. Diagnosed in 91. Treatment with Harvoni completed in 2015. Virus undetected. Like you I'm grateful. I was able to have treatment. Like you I'm going through some things that just get blown off. Yet lately I see other people stating they too are experiencing similar health issues since completing Harvoni. I don't want to discourage so I just look at the fact I don't have the nasty virus attacking my liver. By the way it's early cirrhosis. I like to think what's done by the virus has stopped. Yet, I'm wondering who has answers about after treatment?
Theres been a few things, mainly the ignorance and the lack of information and how hep c is made out to be a sex disease, which is isn't, unless you're ultra kinky and got a blood fetish thing going on or something, if it wasn't for the hep c trust I dont know what I would of done! Certain health 'professionals' I had to deal with were very ignorant too and I felt like i had been judged and the hep c was somehow my fault. My most massive annoyance is being able to prove I had a blood transfusion as all my medical records have gone missing, including blood tests which i had been getting from as young as 7 have all been lost up until my diagnosis in 2014 and everywhere I have turned to try and prove it I have hit a brick wall and made to feel like a liar whos trying to point blame at the cause of infection....
Yes, the focus on the cause of the virus is a horrible aspect. Especially when you don't know and assumptions are made by others. It was the Hep C Trust who first said to me that it doesn't matter where I got it from, to not keep trying to figure that one out, to focus on living the best I can with the virus and to be hopeful for treatment one day when the time and treatment is right for me.
The most frustrating thing about being diagnosed with Hep C was the continued lack of recognition from the medical profession of the impact this diagnosis can have on every aspect of the life of a person: family, work, relationships on every level, hopes, self esteem, short and long term life plans, social, travel, financial (eg, insurance premiums), etc, etc.
The GP just said "You have Hepatitis C, it's a notifiable disease" and nothing else until I asked questions and continued asking questions over the next 7 years. I think I was in shock for a very long time. I remember at one stage wishing I had been diagnosed with cancer. I would have been able to tell everyone, to not feel the shame, guilt, self loathing and perhaps to be offered care, medical support and treatment. That's a horrible memory.
The people at the Hep C Trust saved my life, my sanity and my dignity. Without their knowledge, their kindness, their humanity, their empathy, their consistency I don't think I could have perservered with the health system or had the confidence to fight for myself and eventually for the clinical trial that cleared the virus. Thank you to them, for everything.
Today my consultant rang me with wonderful news. 3 months post completion of Harvoni I am virus free. Thankyou, thankyou, thankyou...for the those who have invested time and work into modern medicine. I feel very fortunate! For those of you waiting, trust in the solutions..they are out there. xx
Good luck now going forward,great news 👍🏻..alan
Being tired, a chef joints. The symptoms really. I use to be a vert active person and still try to be but struggle some days and the depression because it's not me. Generally the having it not knowing when I will get treatment, what damage it will do in that time and the lack of support in the UK for it. It's a very shit virus to have and has flipped my life upside down but I'm starting to gain control again slowly.
Parliamentary and health service ombudsman. For if your not happy with NHS.
The most frustrating thing was the wait between diagnosis and treatment. Yes, I was waiting for the new treatments to be signed off by N.I.C.E. But the delay caused me major mental health issues, as I was dealing with bleeding through Ulcerative Colitis making me feel I was a walking biohazard.
Hi everyone, Hope you are feeling ok.
8 weeks of treatment with Harvoni. Genotype 1a
Just wanted to update you on my progress. Had my 12 month blood works and good news, Virus still undetected. Yay! Now I just need to take a bit more time to heal. Will keep you updated on my progression.
Good luck to all.
Take care.
K.xx
Congratulations 🎉🎉🎉 looking good and nice to hear the positive news 😎😎
Thank you so much. Not long for you now, soon whizz by. Good luck with the remainder of treatment.
K.x
Mine has been the complete lack of any kind of support whatsoever. Also the way I’ve been treated by certain health professionals I have seen some improvements in that area in recent years. Then there is the fear stigma and isolation the mental and physical symptoms we all have to live with.I often think all that’s dismissed by GPs.I do think the support is the main one though.x
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