Hepatitis Forums
Hepatitis C Main Forums => Living with Hepatitis C => Topic started by: beto on September 24, 2015, 12:48:46 pm
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As we have all related our stories of the trials and tribulations of dealing with the slow burn of a disease that moves at a snail pace, yet affects us daily...It had occurred to me, that the loved ones around us, especially spouses and children, live with our experience and the dwindling fallout. So I asked my wife about it and got a very concise and emotional response. Most of our married life (30 years), has been plagued by the uncertainties of living with subjective symptoms and omnipresent fear of dying. When you are the direct victim, you do have the luxury of the excuse of being ill. You are afforded behaviors that might be a direct result of hepatitis. We can call off birthday parties planed for us last minute, cower in bouts of depression, drown our spouses in our victim rhetoric and generally be allowed our space of self absorption.
When I was finally approved for Harvoni (3 official denials) I noticed that my wife seemed strange when I told her the good news. She explained to me on a later date that, she was very happy for me, however, a bit jealous. I of course was surprised by this. She explained, because there is a pill for you, but none for me. Her fears and her woes, she went on, always felt illegitimate, as she did not have the life threatening disease...just all the same fears.
I recall an occasion when I laid into my small son, years ago, when I found him playing with my razor. I was horrified. I sat my kids down and told them to never ever touch daddy's razor. This is not the response a "normal" father would give. When my kids were young, it was at the time when a diagnosis of C was a death sentience. Truly, though I always tried to stay up beat and "normal" I must have displayed behaviors and subtitles that could instill complexes in my kids.
I have known of spouses that had found living with their 'hepper' as unbearable. Though I was lucky and mostly asymptomatic, the cloud was always there. The fears were ever present, the brain fog, the listlessness, the moodiness, the anxiety attacks, the countless odd and un-explainable neurological manifestations...they were always there and a part of the family, no matter how hard I tried to mask them. In the morning at breakfast at the table was me, my family and the invisible affliction. At night the invisible affliction followed us to bed.
My wife has lived with the third person as much as I, however, devoid of the sympathies that come with victimization of long term illness. Loved ones care about us and feel helpless. We the heppers, at least most of us, have come to terms with our own mortality...our loved ones may not.
thoughts on this?
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Spouse and I were already engaged when I received my first major diagnosis (one that five months of treatment failed to cure, so I had the splenectomy that involved the transfusions that unknowingly gave me HCV). We both assumed my fatigue was due to the lack of a spleen and a later lupus diagnosis, but we worked around it. One or both of us always managed to bring in adequate money, and we both know how to do all the basic chores. A totally unrelated genetic issue made us decide not to have children, so what energy we had between us has been adequate. We probably socialize and travel much less than the average couple, but we enjoy each other's company, and Spouse gets to go on work-related trips. Spouse's colleagues know why I am sometimes not up to attending work-related social events, so Spouse gets commiseration from them.
The only two times I can remember being depressed (at ages 25 and 31) had nothing to do with illness but rather concerned whether I would be able, in restricted job markets, to find a salaried outlet for my talents and interests. I "solved" those depressions the way I tend to approach all problems: I look for creative solutions, a process that gets the feel-good endorphins and dopamine flowing.
Where mortality is concerned, Spouse has definitely had "anticipatory grief" during my various diagnoses and illnesses. When Spouse was diagnosed with cancer eleven years ago, for the first time I had to contemplate being widowed! Both of us find it harder to watch our lover being ill than to be ill ourselves. As our hair whitens, we find our time together ever more precious, which has deepened the marriage.
Sorry that I'm atypical in having an entire menagerie, rather than just one elephant, in the room. I guess we just got used to our house smelling like a zoo!
Gnatty
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Wow beto, just wow...
Thanks for making me cry! (just kidding! and not :) )
I'm not sure I'll ever truly understand what my husband and 2 grown boys have gone through... I do know they've had an on and off "sick" mom. We all knew, since there hasn't been a cure for the past 24 years (that worked reliably and didn't almost kill you itself) that I'd probably not live to see my grandchildren grow up. They knew the hep c cloud well, just as your family knew it.
Occasionally, I'd try to understand their experience of this disease. It'd end with me bawling and apologizing. Which made us all want to shove it back in it's closet... :/
It would only be fair for there to be a pill for our loved ones! What a burden they've shouldered.
I hope that "pill" can be us post tx and recovery. Getting, then giving back some of what's been lost. They can share in our victories as well and that third man won't be there this time. :)
bbc
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To Beto, Gnatty and ByeByeC
Well my significant other also contracted the virus but his body magically cured itself. I remembered when our diagnosis came I felt upset that I was the one that had the virus. I must have given it to him because of a blood transfusion during childbirth with my oldest son in 1979. "How unfair is that God!?!?" I asked " I'm the caregiver to all, it can't be true?!?" But it was. From that day forward I told all three of my sons. Two were tested negative but the oldest refuses. He also had a complete transfusion. We were both tested for HIV/AIDS but no one thought the test for the nonA/nonB hepatitis back in the early 80's. wasn't an issue then. And I just settled in my mind that whatever comes my way I will fight the demon and thankful I am able to get TX. One thing though is my son will not allow me to tell his wife for fear that she won't let me watch the two little ones whom we care for daily. I am very careful with any cuts or sharing of personal items. But do any if you think it's possible I could pass this to my previous angels Our 2 yr old is always with a rash and runny nose. Makes me so afraid. Any suggestions anyone? I treasure everyone's responses.
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Hi MelHu :)
That's a pretty complex situation you're in... You have no choice but to honor your Son's wishes. Just as each of us has had the right to decide this for ourselves.
I do worry for your son though. That's a heavy secret. One he might not even have to boot! That is probably making him feel unnecessary shame and guilt. Hep c is bad enough without that plus uncertainty that you even have it, heaped on top.
As for you giving it to your grand babies, unless you bleed or bring your blood into an open wound on them, it just doesn't happen. You're a very safe provider for them since you never allow anyone near your blood. If you're on or get treatment, you won't have it to transmit!
God bless :)
Bbc
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Beto, that was an exceptionally beautiful and thoughtful piece of writing. Thank you so much.
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Thank you for sharing those touching stories.
I was only recently diagnosed and it was a huge shocker for me! I cried frequently and often uncontrollably. My husband, on the other hand, was confident from the start that I would be treated, cured and live a healthy life. He was my rock. His confidence was infectious and kept me strong and motivated. I have always been healthy and active physically. Other than some nagging fatigue, chronic joint/muscle aches, and Raynauds, which developed over the last few years, I had very few symptoms that would even remotely raise a red flag that I was harboring this destructive virus. During this entire process, my husband was there for me - giving me a shoulder to cry on, support me by attending appointments with me, and researching alternative options for obtaining medications. He was also telling me I WOULD be cured, I would be strong and active again very, very soon.
My close friends and sisters check in with me and pray for me regularly. This virus has had a huge impact on those close to me, but in kind of a strange way...much of this has been good and brought me closer to the people who matter the most.
Mary
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Thanks everyone. I have a silly question. How do we post our personal stats so I don't have to keep inputting them?
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Thank you Beto and everyone for sharing honest and sensitive thoughts and also a prompter for us to consider others. I'm a single Mom of two adult boys. When I was diagnosed in 1997, my boyfriend (we were planning to get married) left. Not right away... he wasn't scared or freaked out... it's just that the party was over for him.
When I did interferon/riba - I literally locked myself in my bedroom for the majority of the time so I wouldn't rage at my then teen-age boys just for walking past me (i.e. no reason at all). I had a friend living with us who was a great help. Looking back, man on man, was that a harsh time.
One of my sons doesn't even know I'm on Harvoni. I want to wait until I'm cured to tell him. He has no qualms at all about me watching my 2 yr old granddaughter. None of them treat me like I have hep c. They expect everything that a Mom is and then some. (Sometimes I think they are incredibly selfish.. but that's their journey). So, I've had to stand up and do it. I've had to be creative to earn a living. No choice. But it has kept me strong...
While Hep C is a nasty virus, I also think about the opportunities for growth I have had because of it (much like cancer people talk about). While in a sub-conscious and physical way, I know I have been hobbled. I know it has kept me from being more open to a relationship with a partner.
I think about the lessons I can learn from all of this and how it is incumbent on me to 'pay it forward' and to see life in a different way. I know now, assuming I am cured and I believe I am, that my journey continues... and I hope to not hold back, not to live in fear, and to live full out. Like the song "I hope you dance".
In many ways, that's everyone's personal journey - even our significant others - despite what we all have to deal with - because every family has something at one point or another. It's how we live that matters... especially from here on out. And that is each individual's personal responsibility to themselves.
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Hi MelHu,
Go to top of page look for the profile link, choose that then scroll down to where it says signature. Type your stats in n save :D
Bree,
Perfectly put. :)
Hugs, Marianne
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Holy cow. Thanks everyone for your stories. We heppers are in touch with our emotions when we all get together. Like our hep-c 1-A, we all react a little different, so do are our stories. One at a time.
Gnatty- you and your hubby are an inspiration. You guys have had quite a go. I love your steadfast commitment to moving on in spite of challenges that would bring most to their knees. You keep that sense of humor going as well.
Bye bye- Truly, I had not given thought to my effect over time on loved ones. It's not like I went through that period like a depressed zombie...but this sort of limbo most of us experience...the less than living component. We are all strong people or we might not have come this far...but we got here with support that required great patience. Yes you are right, their pill is our return.
MelHu- Indeed a trying situation for you. It is very sad and unfortunate that you are discouraged from playing your grand kids. This is because of fear and a general lack of education. I understand parents want to be protective of their kids, however, the ground they play on and the table they eat at represents germ abundance...where as it is impossible for them to "catch" hep-c from you even with loads of contact. Hep c is difficult to contract and only through blood to blood contact. The the virus is not in other body fluids. Perhaps you should bring them educational materials. Some folks are a bit paranoid. I had a massage therapist refuse to touch me after I disclosed my issue.
Philly...thank you.
MaryC- Your hubby sounds great. My wife has been a wonderful support as well...keep up the fight.
Bree- Yes you are right. I also sometimes forget how strong this virus has made me and what I have learned. For example, though I gave up careers and opportunities, having the virus put me on a path to holistic and integrative healing studies. This pursuit has enriched my life. Might be what all this time I was meant to pursue.