How has your diagnosis impacted friends/family/social interactions?

[CalvinHU]

Share your experiences and interact in the comments below!

Questions will resume on Monday the 25th. Hope everyone enjoys their weekend!

[cyclegal]

I know some friends were quite careful not to drink out of the same cup or bottle as me. All my sons had to be tested and it was a worrying time for them waiting for the results to come back. My family are concernec my life will be cut short because of the cirrhosis. I also on't socialuse as much as i'm too tired these days.

[Dlr35 in reply to cyclegal]

Go get treated with the new meds you will be glad you did you can't catch it from drinking or eating after anyone only if your exposed to blood... Your worrying to much I got treated with zepatier equivalent to harvoni 12 week treatment I tested negative after 4 weeks of treatment and after 12 weeks still testing negative... No side effects it was the easiest treatment I could have ever done...

[cyclegal in reply to Dlr35]

I was treated years ago!! I'm clear but i still have cirrhosis.

[Chefkarl]

Massive. Confidence gone. I haunt told many people and scared to sleep with anyone. Broke of a relationship and very isolated

[belintte in reply to Chefkarl]

Damn what kind of people do you surround yourself with? I think you are better off without them. Have all these people who have been so unsupportive been screened theirselves, I suggest they do before they start judging you my friend as there are a hell of a lot of people out there walking around with this and don't know it and therefore will not get access to meds and they could become real ill or die, tell them that when they are sitting in judgement. As far as sex as long as blood is not involved if you wear a condom which everyone should anyway as there are far more dangerous diseases than this that you can catch from sex you will be alright, watch out for crabs though Don't feel isolated find your nearest Hep C support group and get down there if you don't have the confidence to socialise.Concentrate on getting yourself better as you are the only person that this affects. Get well soon.

Bx

[SimonHM in reply to belintte]

Thank you for your kind words. Yes I am working on getting better. I am also heavily involved with the HIV community through the Terrence Higgins Trust and Positively UK. I have been getting myself trained to be a Peer Mentor. I am also striving to raise awareness about both HIV & HCV. In the meantime it’s one day at a time

[Phillipaussie in reply to SimonHM]

well done you, I wish you all the very best, that took some guts to say what you have said and I appreciate your honesty.well done I hope you do well.

[SimonHM in reply to Phillipaussie]

Thank you. It’s a tough journey but I am getting there

[Dlr35 in reply to Chefkarl]

Don't do that... This disease is very treatable now you can only get it if your exposed to blood a married couple only has a 5 percent chance of contracting it from an infected partner.. Don't be so nervous you can't let this control you

[SimonHM]

Yes it did have a huge impact on my being able to socialise. Being Co infected HCV & HIV. I had to deal with the stigma and ignorance of others for both Deseases. I actually got more understanding from people about my HIV then I did for my Hep C. I became very isolated as my whole world seemed to implode. For my family and close friends it was a steep learning curve. But they were open to that. Whilst waiting for Hep C treatment, although I was on effective HIV antiviral therapy. Meaning within a month of diagnosis I had an Unditectable viral load for HIV meaning I couldn’t pass it on. But I became to the Unditectable Invincible’s within the HIV community. And they should have known better. Because they were worried about getting Hepatitis C. Even after I had treatment for the Hep C.

[Sillysausage234 in reply to SimonHM]

Forgive my ignorance about hiv Simon ,how long is the treatment for?

[SimonHM in reply to Sillysausage234]

There is nothing to forgive. At least you are curious to ask. Well, the combination antiviral therapy is for life. I have to take my medication every day until I pass away. which now with the effective treatment I have about the same life expectancy as any 50 something man, with a number of medical issues. as I now get lots of medical check-ups. And my various consultants monitor all of my bodily functions.

[SimonHM in reply to SimonHM]

The Combination Antiviral Therapy does two main things. Firstly suppresses the HIV virus in my blood. leading to having such a small viral load, its know as undetectable. This means I cannot pass on HIV to someone else. The second thing it does is to ensure the HIV virus is allowed to develop into AIDS. It's an Aids-related illness that would kill me if it had the chance.

[Sillysausage234 in reply to SimonHM]

Amazing stuff the way meds have come on since the late 80s

[belintte in reply to SimonHM]

Right on Simon great attitude

B x

[Sillysausage234 in reply to SimonHM]

I believe ulcerative colitis is hard to keep control of ,a friends daughter has it ,unwell all the time,a real shame ,she's only 18.

[SimonHM in reply to Sillysausage234]

Well, i have Ulcerative Colitis as well. with my medication, i have stopped the bleeding ulcers in my rectum. But I do suffer from the IBS issues related to Colitis

[Sillysausage234]

Lost a good relationship,15 yrs ago been single since.

[Londongal]

I’m married and have had good support from my husband, but it has been hard. He thank god, hasn’t been infected. I only told my closest family.

I only worked part time because of the fatigue and didn’t tell any one because of the stigma. I told some people I was unwell, but didn’t tell them with what. One of the hardest things I found, if I was unable to do something that someone wanted me to do, and them not understanding why I couldn’t do it. I hated people thinking I was being unhelpful or lazy, which I’m sure they did. They don’t understand that i have already reached my limit, and need to pace myself or will be even more useless the next day. Some days not being able to speak clearly and make myself understood because of the fatigue, not being able to speak to anyone by the afternoon for the same reason. Not having a social life anymore. Keeping this big secret is also hard. I developed slight O.C.D worried about infecting other people. Depression, anxiety & loneliness have been my constant companions throughout this journey. Complete lost of confidence and friends along the way.

Best K

[Dandelion_1]

The diagnosis impacted on family, friends and my social life quite dramatically and instantaneously. I told only one person in my family, the only one that might have been affected by the disease, my daughter. If the very low risk of her being infected wasn't a factor, I wouldn't have told her, burdened her. I waited three months to tell her, the time had to be right for her. It was the worst wait of my life. She was wonderful about it all, she tested quickly and was not infected and was supportive through everything. She laughed and made me laugh when I told her the story of first time I accidentally cut myself after diagnosis. I was mortified at the sight of the blood, I panicked, washed the small wound and put two plasters on this tiny scratch, then bleached the sink and washed the towel at the highest temperature I could. I nearly threw it away! When the time came to take the plasters off, opened the back door, held them up, put a lighter underneath them, scorched my fingers, the plasters stuck to my hand so I waved it around frantically, they flew off and stuck to the shed door, burning. I threw the black mess in the bin, wrapped up in tin foil in case anyone touched it en route to the dump. Ridiculous and I hope you're laughing now too! The shed door still has the burn mark and I've left it as it is it. For when I need a laugh and to remember that, with information, support and time, things can get easier.

The friends I had told soon after the diagnosis disappeared and stopped contact. I know, they weren't friends but they were part of my life and I was a friend to them so it was nother loss and painful to deal with. The people I didn't tell knew something was wrong. It was strange not confiding in them but I was glad to hold off in the early days and very glad now. The explaining is exhausting in itself. The illness impacted on social interractions of all kinds, low energy and confidence, a feeling of being an outsider or undesirable or dirty so avoiding events, not having a drink at all for fear of hurting my liver, overthinking everything, etc.

Not great experiences of other people but a lot of lessons learned. I decided to make sure that I put my needs first in any relationships. I only want good people in my life now and if that's not happening I'll be happy being with myself.

[Sillysausage234]

Another great post dandelion...explains the illness well.

[Dandelion_1 in reply to Sillysausage234]

Thanks for your kind words. It's made me realise how rare it is to be asked questions like this during a serious illness. The vague "How are you?" is designed for the response "Fine" or "Not too bad". Over the years, it was me asking other people all the questions about the virus, effects and treatment.

[Sillysausage234]

Hi.d. I enjoy reading your posts and the way you're able to put into words what we are all feeling!

[belintte]

Hi All :),

I hope your all having a good and safe weekend with as little side effects of the meds as possible, I had a couple of really crappy days this week and have been terribly moody and snappy but I know it's down to the meds so just deal with it, and everyone round me has to, to I do note visitors ain't stayed long this week lol

Onto the question in hand what did family and friends say when I told them I had Hep C?..well nothing really it's no real biggie unless some of them are vampires then its their fault if they lock onto my neck. I am careful when peoples visit to warn them not to use my razors or toothbrushes I have plenty of new in the cupboard at all times, and always take my own when they visit. If I cut myself I ensure its all dealt with by me as I am aware of infecting others and would hate to do so. Some people give it poor you but when I explain it to them they seem the same fun loving people as ever You are in no way expected to tell people you are Hep C but I have been for blood tests before now and the person taking blood were not wearing gloves so I tell them, even though they should change gloves after every patient!!! So really id play it by ear if I was to advise anyone into fessing up to having it, as you know best how your family and friends will take it, older people i've found and I'm 50 are the hardest to explain to so perhaps its best not to bother, why worry people who need not be. Anyway the most important person in all this is you and how you handle it, and how you feel about it, your the one going through it and know the chances of spreading it is next to minimal, you know the precautions to take and that's that, there is nothing anybody but your consultant can do about it anyhow, so its up to you. Don't go playing on it as the first thing people you tell will do is Google it, take a look at you and unless your glowing yellow are going to know your just playing to the crowd, save the sympathy vote for if your medication doesn't work and it does not clear it as that is what I am dreading and I may need a lil support then but until then fingers crossed there will be no need for that convo

Its up to you at the end of the day,if you keep it safe perhaps tell them once you have cleared the virus......Its horrid knowing its there though ain't it but hang in there the meds are a pain in the ass but are brilliant....Stay safe all and hang in there.

Love B x

[Sillysausage234]

Hi b, good to see you back, this site was like a ghost town quite, an eerie place to visit till you started posting...hope your meds are not too much I'm sure you can hack it though,how long is your treatment for? And do you know the success rate ? ..x

[Tess74]

I found the few close friends i did tell mainly reacted with confusion, they tried to be supportive at first but then their instinct (ok...Im being nice...ignorance) kinda made them want to keep a massive distance and in some ways I understand that, if you google hep c the information is pretty damning to be fair...that did make me feel isolated when I had to face starting treatment because i was terrified by all that but I just got on with it. My mother is in a constant panic about me becoming more vocal about it...she'd prefer it if no one knows lol...and on a massive plus side someone I used to vaguely know I ended up venting to him (a bit drunk at the time) just after i found out that I had hep c and he just looked at me, talked to me and didnt judge me and became a big support when i went down the treatment route and is an A Star friend to this day and I am truly thankful for that. What as urked me post treatment for those close friends or family members who do know about my hep c journey seem to think I should just put it behind me now ...its over, I'm cured etc...but I'm finding this journey is long haul..it not like getting over a throat infection, I'm finding the aftermath a pretty rough ride in its own right!

[Phillipaussie]

I personally have been ostracised and avoided by friends and family, the family wasted no time letting people know I had hep c.this has had a huge impact on me as I find myself becoming less trusting of people.

My own Grandchildren have been detoured around this and now I don't see SOME of them at all, its a crippling way to destroy a character and there is no coming back once the damage has been done, I confided in a family member who is an oncology research nurse and she made it common knowledge that I'm infected, someone of such stature should have been more professional and discreet but has blown the lid on my privacy.