Author Topic: Cured Except for the Secret (Read 13444 times)

Labell · « **on:** September 13, 2016, 10:31:51 pm »

Is anyone having emotional issues from carrying this secret for so long? I have been cured for almost a year. My doctor is still monitoring me, but my blood is clear and my Fibroscan barely registered. I am glad to be rid of Hep C. It was a huge burden to carry. I should be jumping for joy but I am overwhelmed. It is like my life partially stopped in 1998 just carrying that stigma and secret. Now, I can move forward but I clearly can't get back those years. I can't really put into words how I feel. Am I the only one feeling this way?

Baxter · « **Reply #1 on:** September 13, 2016, 10:35:18 pm »

I don't think you're the only one, but it was never a factor for me. I never made a secret of it. I can understand why others would, of course. To me, that would certainly have made it harder. And having kept it a secret would have taken half the fun out of being cured, because I wouldn't have been able to tell anyone!

Philadelphia · « **Reply #2 on:** September 13, 2016, 10:59:10 pm »

I didn't really keep it a secret, but I can imagine the emotional stress of doing so would have been a heavy burden to carry. While my friends and family knew, I did make the point of going public with my diagnosis and treatment on radio, print and tv to help raise awareness. I found it strangely liberating. I could stop thinking about who knew and who didn't and just assume everyone knew.

Have you ever thought of seeing a counsellor? I saw one ages ago when I was really sick with HCV and didn't know what the future held. I found it really helpful to talk through my issues and concerns. A support group might be helpful also.

I'm sorry you feel overwhelmed. I hope you feel better soon.

Labell · « **Reply #3 on:** September 14, 2016, 12:06:49 am »

I went to a support group a few times very early on when I had no clue what I had. It was depressing. There were a lot of really sick people, and I walked in looking like health and vitality. I felt guilty and stopped going. There were also stories in my city - fire personnel and EMTs with Hep C, sit ins at city hall. The misinformation did not make it easy to talk about. I will search my area for support groups. Thank you.

Mike · « **Reply #4 on:** September 14, 2016, 12:01:52 pm »

Hi Labell,

You're not alone. I felt the same way and never told anyone about my status (not even medical professionals, given the fact that they couldn't refuse to treatment me and are directed to use universal precautions at all times and with all patients).

I just felt shameful and like "damaged goods."

I've been cured for almost 18 months and have put it all behind me.

While it is true that we can't get back the years, we can sure choose to get with the new years. We can choose to change and live in the here-and-now.

I'll talk about my status if asked, as it is sure nice to say "I had Hepatitis-C. Not I have Hepatitis-C."

You can't change the past and there is no guarantee of tomorrow. All we have is today. Don't let the past ruin it!

Best wishes, Mike

KimInTheForest · « **Reply #5 on:** September 14, 2016, 03:35:06 pm »

You are not alone in those feelings Labell. I had Hep C for about 45 years, and knew about my status for the last 20 of those years. I told virtually no one in that time. My choice to not disclose helped to keep me alive and healthy. It is hard to view yourself as healthy and vibrant when the rest of the world has a different construct of you and is feeding that back to you everywhere you turn. So I don't feel silence was the wrong choice.

When I was cured last year, I wrote a book about it. So I could hardly keep it secret after that since I had a book to promote! haha

I had always felt that my secrecy about my Hep C status had been protective and a benefit to me all those years, not a burden. But the day after I issued my press release announcing my new book and my former Hep C status, I was walking through the supermarket and noticing I felt 10 miles high. An enormous weight had been lifted from me by disclosing - a weight I had not even been aware I was carrying all those years.

My suggestion (for what it's worth) would be to use your Hep C story in an empowering way, so that you 'come out' to the world (or to whomever) from a position of personal power and rejoicing and advocacy for others who have not yet been cured. The world will respond to you on the basis of whatever type of energy you choose to put out to the world. They will rejoice with you and praise you for your courage if you come from a position of joy and personal power. They will respond differently if your disclosure is tinged with regret, anxiety, long-carried stigma, etc. You are the orchestra conductor in your life. So be deliberate in setting the tone and tempo where your disclosure is concerned.

You could, for example, share your story on the HEP Stories section of Hep Mag. It is curated/edited by one of our forum moderators, Lucinda Porter, who says: "It doesn't need to be very long (a few paragraphs), and we have a copy editor who spruces up the punctuation. You can submit it online: https://www.hepmag.com/category/hep-stories"

Good luck to you! And remember, you are not alone in any of this.

kim

Labell · « **Reply #6 on:** September 14, 2016, 07:48:02 pm »

"Damaged goods." That's exactly how I felt on the inside - mentally and emotionally. Now I just have to get out of my head mentally and emotionally and move forward. Thank you, everyone. I appreciate your stories and responses.

Mike · « **Reply #7 on:** September 14, 2016, 07:56:05 pm »

Hi Labell,

Don't let that label effect you anymore. We're cured! Both of us!! What a great blessing and freedom. I never thought I would be able to utter the word: "Free at last. Free at last! Praise God i'm free at last!"

Best wishes, Mike

brie41 · « **Reply #8 on:** September 20, 2016, 01:09:44 pm »

Hi Labell,

I hid my disease from quite a few people but mostly because I had a young child when I found out and I was afraid of how the other parents would react. But I was so lucky to have a wonderful family, mine not my Husband's, and good friends that I could lean on for support. It is funny how I felt guilty not telling my Dentist and when I did I regretted it. A new Dentist came in and started talking very loudly about my medical history, I was horrified, and even had a Dental asst. come in to take a look at me. I felt quite low at that moment, but you know I then decided that people will always judge for some reason or another. I am now cured and must say that it is nice to not have anything to hide or feel like I am infectious. I remember calling my best friend the day I was diagnosed and told her I would rather have cancer than hcv. She said I was crazy but I was so overwhelmed that I may have infected people without knowing. Once I knew that wasn't the case I did what I had to do to deal with it. That was always the worst part of it for me. I hope you can put this all behind you and know you beat it and it is over. Enjoy your freedom, you earned it!! Brie

MommaT · « **Reply #9 on:** October 01, 2016, 10:44:02 am »

Hello Brie-
I am glad you are Hep C free. I understand and I am baffled that there is a stigma attached to the disease. It started on TV with references as if unclean. This stigma is going to hurt all in the long run because the spread is now staggering. There are so many ways to get Hep C! Now as for AIDS-that attitude shifted to become a very outspoken VISIBLE disease. Many Celebrities and people of notoriety were vocal and SUPPORTIVE. I keep the secret-I am irked when asked by doctors how I got it. Actually it is irrelevant! If I had Breast Cancer there is the pink ribbon and Susan Komen runs-raising awareness and money to fight the disease. If only 1 Philanthropist would stand up and put a face to the disease in a commercial-To show the Fathers, Mothers, Sons and Daughters and right now very young children. PLEASE Take away the stigma! This epidemic is big! Sorry, my rant!

MommaT · « **Reply #10 on:** October 01, 2016, 11:04:26 am »

Hi Labell-I see you started this topic and a year after being cured it seems to bring up looking back at the years of struggle. I am just starting to try to be cured. I think it is normal to have feelings looking back it did effect you. Also if there is a day that there is a happy commercial of smiling faces-we are together, we had Hep C-now are cured and feel loved. I almost feel like it is like the Vietnam Vets and an unpopular war so no fan fare. Wouldn't it be great to shout it from the roof tops! I battled a debilitating disease emotionally and physically-and now I Am Triumphant! All I can say we are the Silent Heroes. My hope is someday like the Vietman Vets we will not be shunned silent and forgotten. They finally got a Memorial. Where is our acknowledgement and support for an 'Unpopular Disease"-I am waiting........

brie41 · « **Reply #11 on:** October 02, 2016, 09:42:39 am »

Hi MommaT,

Best of luck on your journey with Epclusa. I hope you are feeling well and your day will come soon that you will be free of this disease. I just heard another not so funny hep c joke on Saturday Night Live last night. It seems it will always be that way and I am not sure anything or anyone will ever change that. But who knows maybe people will evolve, we can only hope! I know that Hep C was not a complete negative in my life. It forced me to look at a social drinking problem i was in denial about and give that up for good. Also, cleaned up my diet, although still struggle with that at times. Finding great support at sites like this and sharing the fight together, that saved me for sure! Brie

Labell · « **Reply #12 on:** October 03, 2016, 09:17:43 pm »

I heard that Hep C joke on Saturday Night Live. I would say it will just take time for the stigma to be lifted and the jokes end. But, Hep C was discovered around 1989 - 27 years is a long time. Perhaps as more people are cured, it will just fade away.

Scoutdoy · « **Reply #13 on:** October 03, 2016, 11:58:19 pm »

Quote from: Labell on September 13, 2016, 10:31:51 pm

Is anyone having emotional issues from carrying this secret for so long? I have been cured for almost a year. My doctor is still monitoring me, but my blood is clear and my Fibroscan barely registered. I am glad to be rid of Hep C. It was a huge burden to carry. I should be jumping for joy but I am overwhelmed. It is like my life partially stopped in 1998 just carrying that stigma and secret. Now, I can move forward but I clearly can't get back those years. I can't really put into words how I feel. Am I the only one feeling this way?

Your not the only one. Everyone's experience with hepatitis is different, and can be like a roller coaster. The good thing about 2016 is that there is a cure, and that in itself changes the whole game. For so many years we who had hep c were treated poorly, by family, the medical community, and ourselves. We beat ourselves up on how we got it when we got it and the day to day worry about infecting other people. It was absolutely horrible what some people have had to go through and the lives that were lost because there was no cure. I would not look at the time you feel like you have lost because of the disease but look at the future about the life that you have and that you will continue living because of the cure

LightBeingAtLast · « **Reply #14 on:** October 04, 2016, 10:16:02 am »

First of all, congratulations on your cure! What a blessing this drug is for those who can get approval from their insurance companies to take it. Took me a year and a half and four appeals but finally got it.

You are not alone in dealing with the stress of HepC. When I first found out I was positive, I told my husband. Then about a year later I told my two sons who were early teens. For the next two years I only told medical providers. One day I had an epiphany while meditating. I could and should share this burden with my nearest and dearest. They will understand and love and support me. If they don't, well I guess they weren't intended to be in my life at this time. Everyone, without exception was supportive. I realize this might not be the same for all folks, but I do know that those who love and support you will not judge you.

It might be of great help to talk with a professional about it if you get stuck. At a minimum, your Primary Care Physician. This is a big disease that has big impact on our lives. There were times, even with the support I had, that I went on anti-depressants for a short while. They made a huge difference. I am a yogi and I meditate daily. These two things changed my life. I highly recommend meditation. There are many free online guided meditations that may help calm your brain (our constantly chattering minds) and give you a few moments peace. If you continue I promise you will be glad you did. It only takes 3-5 minutes a day but you may eventually find that you can "rest" in a meditative state for much longer.

I wish you the best and will watch for updates. There is a lot of support here!

Karin · « **Reply #15 on:** October 04, 2016, 11:55:07 am »

Hello everyone i have not been on the site for quite a while been busy with my new grand daughter !!!!

I chose not to hide my disease from anyone. The reason being I feared they too may be carrying this sneaky disease around with them with out knowing. I posted it on face book and asked all my friends who were born between 45 -65 to please get tested. I suggested they google the disease and the age range and learn why. i have been keeping them posted on my journey also. I have received a lot of positive support, also some have reported back they were tested and were negative of the disease

I wish I could go on t.v. or anything else to save more. I do not care what others think of me, even for those who have gotten the disease in a negative way try to remember, that was then this is now. Nobody should judge ANYBODY. I know that is not reality.

MommaT · « **Reply #16 on:** October 05, 2016, 08:36:02 am »

Hi Karin-
Congratulations Grandmom! I read your post and admire your ability to share your illness on Facebook. I too wish to shout from the rooftops- get tested!

I don't know why I am so secretive other than to say I constantly feel that Doctors say and act very weird with me! Is it my imagination? Once was comment-trying to be funny Oh, you must had fun in the 60's. I was born in 1954!

Honestly I have no clue how I got it or how long I have had it! One thing I do know is that as a child I received immunizations from unsanitary multi use Jet Gun shots-long now banned (father in Military) and Hep c study shows it was in blood supply highest rate 1940's-50's. One Doctor said well, I'd like to see that immunization chart. Government denies Veterans and their children any wrong doing on their part.

Thank you and I hope braver than me People like you pave the way!

I think it is now an epidemic. The numbers that have it and do not know it are staggering. Disease is the butt of jokes-

They would never mock AIDs thanks to very visible people Supporting the cause.

I will be clear this disease hopefully in 8 weeks and then maybe will be able to share!

Karin · « **Reply #17 on:** October 05, 2016, 10:32:27 am »

HI Momma T, I do not expect everyone to do as I do. Everybody is different and everybody has a different set of circumstances. For some I am sure its even hard to speak on these boards, so bravo to you for that step you have taken

Yea I too was a child in the 60's born in 56 I have no ides where i got it from either, but I remember lining up for immunizations in grammar school so there could be a place. Or the dentist growing up, or any stitches I had and I had a few. So i will never know either. I just pray some how they stop this epidemic so our grandchildren will not fall victim too. I know they sterilize better now but what about the millions out there with it infecting there children and then the childrens children. Kinda confusing but you know what I am saying. It has to be put out there to the world that it is here, it is real,and you could have it. grrrrr i get all fired up when I think of how its not being let known. On those commercials they have for Harvoni they should go into how it could be a hidden disease and how its not only drug users who can get it. ok I am gonna stop now cause my blood pressure is probably of the charts. I'm glad u are here Momma T and everyone else stay strong and get well

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Author Topic: Cured Except for the Secret (Read 13444 times)