It has been a while since I last checked on this site. It’s still mostly the same stuff going on about us wondering when there will be a cure for this virus, people looking to understand their blood works, people wanting to know life changes that worked for others, etc. These are still very relevant information and thank God there are very dedicated community members keeping this community vibrant.
Something has been bugging my mind recently and I just wanted to bring it up and see if I will get some helpful feedback. Before I discovered I had Hep B in 2009, I was a healthy, positive, full of energy kind of person living life to the fullest. Since 2009 to date my life has taken a drastic, not all bad turn, for there have been some positives. Something I want to know is, are we supposed to feel healthy and strong as carriers? I have been struggling all these years fighting to stay strong and healthy but I am getting worn down by the chronic fatigue, the lack of social life, and loneliness. I have heard people say through the years that I should still be able to live a very fruitful life with the virus. I am trying but being human, I sometimes think, I could have done better in life had it not been for this condition. I have stayed on top of my blood work and liver scans and nothing serious has been discovered yet. I do well to eat well but I do occasionally take a sip of wine or beer here and there which I am now considering stopping. I have an appointment with Nephrologist next month to check my kidneys.
All this ranting is because I barely have the energy to do any activity these days. I am concerned that it is something else and not heb b. I have been seeing a lot of doctors to see if I can get some help to gain back some strength. I am in the US. If anybody can suggest to me ways to improve my energy levels, please help. I eat well so I don’t think it has anything to do with diet.
Hi @Mawriz,
Thanks for sharing your experience. I understand your frustration because I am in the same boat as well. I have battled severe chronic fatigue since 2014. Actually the fatigue was what led me to finding out about my status. Like you, I have seen doctors, gone through a lot of test but can’t find anything. I am unemployable because of the chronic fatigue. I have not been able to do the things I enjoyed in the past and hard to stay physically fit. I don’t have answers, but wanted to let you now that you are not alone. I hope some day soon we can get some answers to this problem. Thanks, Bansah1
Hi @Mawriz I’m not a health specialist and I’m sure they’ll answer your questions @availlant@john.tavis .
your words struck a cord with me, I was diagnosed with Hep b Acute on June July 2023, after six months I haven’t been able to clear the virus so I guess I’m into the Chronic side, my journey has only just began. I completely relate ( and Im sure with me so many others)
I thinks your feelings are very real and validated and relatable.
. I believe the obsessive research we as patients to constantly check for “Cure” its a somewhat a mantra that keeps everybody hoping for better life, free of stigma, free of the constant bloodwork and monitoring, free. of medications, loneliness, and feeling more involved about the future. One, don’t realizes what happiness is until something happens.
Having said that I think we are closer than ever to have new therapies! and hope.
I believe in your case it’s not really physical. you should try to talk with a therapist. (if you can)
would be very helpful (it’s being beneficiary to me. a lot).
but remember the beauty about this forum even though it can’t answer all our questions at times, it still provide support and informations and sense of belonging.
You are right. It’s definitely not been easy, but I have been managing by taking it one day at a time and doing the best I can. I remain hopeful that one day I will find a solution to my unrelenting chronic fatigue. I remain hopeful. I have a stubborn and not giving up attitude. It’s served me well at times, but still never easy. We keep moving forward and hope for our best days ahead. Thanks, Bansah1.
I’m not HBV+, so I cannot speak from experience on this, but the topic has multiple levels to it.
Physiological level: How HBV affects health can vary tremendously from person to person. A very many patients experience no symptoms at all for decades, but others are strongly impacted. It just depends on how much the virus is damaging the liver, and that often changes with time. It is not reasonable to expect a person with HBV+ to simply suppress symptoms by force of will. Consequently, it is important not to feel disappointed with yourself if your symptoms flare up. That’s biology, not weakness.
Emotional level: Having a chronic illness is emotionally scary and draining. Here I can speak from experience as I have a couple of chronic illnesses that will be with me for life and have a good chance of eventually contributing to my death. It is perfectly understandable for the uncertainty and worry associated with such diseases to cause strain, sometimes severe. That is normal, and it can vary widely over time, even over a given day. The strain can manifest itself in physical illness given that a person’s emotional state is critical to health. I’ve found that accepting that I have these conditions and working diligently to control them as best possible helps me. I usually don’t discuss them with people other than my wife as I am a very private person, but many people feel better sharing their concerns with others. I’m glad the HepB Community is here to help folks with HBV!
I saw so many posts about fear, anxiety, and depression among the younger patients in our group. I’m afraid part of the reason is not fully understanding the disease; another reason is society’s stigma. I want to say that HBV is not a death sentence. I discovered that I had it since I was 18 when I donated blood in college’s blood drive. (1976) I was unsure what it was then; no treatment, and the doctor told me I was a carrier. I have no clue what that means. Later, I got married and had two kids. Both of them had the shots when they were born and afterward. I am a 65-year-old female who is considerably healthy today. I want to encourage everyone to have positive thinking. If you are under treatment, please be diligent in doing so. If you are in a relationship, please make sure your partner has vaccines to protect. The anti-viral medication suppresses the virus and stops liver damage. I started treatment by taking Entecavir when I was 53 during a routine blood check that my ALT was elevated. My primary doctor referred me to a gastroenterologist, and I began my treatment. My DNA load dropped from millions to undetectable within the first four months. I continued to take it until year 4, when I decided to stop taking it to see if I would be lucky enough to reach that 4% seroconversion. Unfortunately, my DNA load was increased every 3-month check; it went higher and higher. After one year of absence from Entecavir, I agreed with my doctor that reaching surface antigen negative in my case was very slim, so I have been back to Entecavir ever since. My DNA load is still maintained undetectable. This year marks year 13 of it. I “treasure” this little pill that keeps me at peace. I am thankful that we have a way to manage this disease. I think many people take medication for various diseases; this is not different from any other. I hope my brief can ease your mind and help you. You can have a healthy life as long as you care for yourself. Mentally and physically.
Thanks you @jce1234 for your kind and encouraging words.
The advice you are giving are from experience, it helps immensely for young and non young patients to hear positive and encouraging point of view, we need more input like yours. thanks you again
Thank you for being so supportive and open with your experiences. Indeed, I think it goes through the heads of most people with Hepatitis B.
Part of the coping with these issues is becoming informed. I’m not advocating that everyone with hep B has to do a degree in molecular biology, get a PhD, and head their own research lab (though I did); but understanding the disease and what causes it (and within the context of all the other things that infect humans) was empowering for me.
I also think gratitude is a large part of getting through each day, to keep in mind what we should be thankful for. Knowing that I’m in the best period of time so far to have hep B (tests and treatments are available to me) and that it’s only getting better in the future, makes me feel lucky. Every day I have on this earth, I try to acknowledge and be grateful for. I’ve even started a habit of writing down a daily gratitude to put into a bowl, and will read through them at the end of the year. Altogether this gratitude thing is still a work in progress, but trying has made me a happier person.
Being grateful is always good. I only often just throw my hands in frustration every day, though I put a lot of effort into keeping myself relevant in society I don’t look at those positives. I am burdened by negativity. How I wish I could think otherwise.
Positive thinking doesn’t come naturally to some people (indeed, it doesn’t to me). It is work, but starting small is the first step. All I’m doing at the moment is thinking of one good thing each day (doesn’t matter how small it is), writing it down, and putting it in a jar. Just try and see if it works.
@Mawriz I ( 37M), was diagnosed with Hep B last November and it is needless to say how shocked I was when I got the news. I cried , I blamed myself, the people around me, God, everyone, I felt as I was the victim of some sick joke. From the first test I couldn’t say if my infection was acute or chronic, so I had to wait nearly 2 months until I get another, more detailed blood test, which showed that, indeed, I have chronic Hep B. In the meantime, I started feeling strong pain in the right abdomen area and of course the first thing that I thought was that I have already developed liver cancer. After an ultrasound that showed that my liver looks absolutely, fine and combined with my good blood test results ( low viral load etc), I kind of calmed down and gradually the pain has almost diasappeared. I read a lot about hep b in those last 5 months, and the more I read and understand how it works, the more relaxed I am. Yes, it is dangerous illness but it is not the end of the world after all, and I am thanfull that I live in 2024 where medicine does wonders everyday and I don’t lose hope. Imagine that 40 years ago, when HIV overtook the world, people used to die in 4-5 months and today most of them live absolutely normal lives. The only aspect that I find hard to overcome is the stigma of having Hep B. I confessed to a very good friend of mine and his first reaction was to blame me for not having protected sex. Unfortunately, most people react in this way (" If you didn’t use condom you were looking for it to catch a disease") , ignoring the fact that above all we are human beings and we make mistakes as everybody else. Nobody blames people with leuchemia, tumor or whatever, but catching STD is a thing to be criticised for.
Physically, I feel almost the same as before I get diagnosed ,except the fatique that wears me down from time to time, but I still have strong apetite, workout 4 times a week and do most of the things I used to do before.
You are doing well.
I understand the struggle of telling people…. I don’t. That’s why I love this forum. I can talk about HBV.
It would be nice if we could but I don’t think it ever will be acceptable because it’s known to come from drug addicts or unprotected sex. Even though it has been contracted from other sources. It’s just too hard trying to explain.
Your feeling, I believe, must have been similar to that of most of us who, due to an error/ignorance, ours or that of someone close to us who we love, ended up putting us in this condition.
my words to you are of encouragement. We cannot let one mistake mark our entire trajectory on this earth. I know how frightening it is to acquire a disease without a cure, but we must fight, stay healthy as much as possible, be diligent and attentive. Follow your doctor’s instructions and keep the faith. I believe that there is a meaning to everything, to good and bad things, and we must keep faith.
This forum is a gift. Being able to vent to people who are going through the same trials and who are getting on with life and overcoming themselves is encouraging. I’m almost your age and I have faith that we have a lot ahead of us.