To Whom It May Concern

To Whom It May Concern

To Whom It May Concern,

Being diagnosed with a chronic illness is difficult. Being denied support and empathy from our family and friends is heartbreaking. I am writing this letter to hopefully educate those who don’t understand the trials and tribulations, the fears and the sadness, that come from living with hepatitis C or any other chronic illness, but especially with one where you look as healthy as the rest of the world.

We know it’s hard for others to understand

Dealing with the fatigue and lack of stamina that comes with hepatitis C virus is hard for people to understand. It is not helpful for someone to tell a patient to go to bed earlier, or to take a nap. That does not work well for the exhaustion that comes from chronic illness. Pacing ourselves and having help from a loved one or a good friend to occasionally do the food shopping, drop off a meal, or pick up the kids from school, works much better. It helps to feel loved and cared for. We have a hard time not feeling guilty about giving up some of our hopes and dreams, and not being able to do the things we used to do so easily.

Please understand when we don’t feel well

Please don’t forget about us when we have to turn your invitations down due to not feeling well. Do not take it personally. Keep asking us. There are days when we feel like we can go to the mall or out to lunch. Having a chronic illness is variable. There are some days that are better than others. When you see us smiling and happy, it does not necessarily mean we feel good. We work hard at not being miserable. Chronic illness is with us all the time. But we can’t be miserable all the time. So, if we sound happy when we talk with you, don’t say “You are sounding better.” We are not better. We are simply sounding happy.

Do not ask us where or how we contracted hepatitis C. Some of us may have made a foolish decision to experiment with IV drugs, even one time, when we were young and thought we were invincible. Some of us may be dialysis patients or hemophiliacs who used blood products before the blood supply was safer. We may be veterans who fought in Viet Nam or the Gulf and were exposed to bloody combat. We may have received a lifesaving transfusion before 1992 when the blood supply became safer. There are many of us who have no known risk factors. The bottom line is our medical histories are ours, and if we want to share it, we will. Just don’t ask.

This illness takes a toll on us

Having a chronic illness, whether it is hepatitis C or any other disease, takes an emotional and physical toll on us. Many of us have had to give up our hopes and dreams. We often cannot participate in the things we used to love to do. Be a good friend. Call us, ask us if we have time to chat. Offer to bring a meal, or take the kids for an outing.

The new direct acting antivirals are now curing the majority of patients. But, just because we are cured, we may not feel much better. Our livers have been damaged. For those of us with late stage disease, it can take a long time to improve the condition of our livers after successful treatment. Some will improve a lot and some won’t.

Thank you for reading my letter and I hope it helps you to understand us a little better.

Editor’s Note: Are you afraid to talk about your hepatitis C? Some people want to learn more about hep C, but also want to keep their diagnosis private. At HepatitisC.net, there are ways to get information and connect with others, without revealing your identity. Click here to learn more about how to talk about hep C anonymously.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The HepatitisC.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (9)
  • Emmana
    2 years ago

    Thank you for your story. It defines chronic illness via HepC quite well. My world has become so small I don’t recognise it, nor myself, anymore. Post antiviral treatment is the continuing unspoken nightmare for a maximum of 2 years as the toxic drugs are flushed out over time. I was or onounced CURED then told that ” I am not experiencing the psychological madness ” from the Ribavirin post-treatment.
    Tough tough times for all of us.
    I hope you are well on your way to some form of wellness.

  • Nancypet67
    3 years ago

    Thank you. It felt really good to read, what I’ve been trying to say, and explain to people who just don’t get it, My Family! They compare me to others they know have HepC, and ask why I’m not up and out like they are…why I can’t hold a job like they do etc…they don’t know enough about this illness and can’t see the affects, because I do function well some days, and then the rest of the time, I sleep and sleep. Or just don’t have the energy to do anything. It’s very depressing, and scary…Ive been alone in this for 10 yrs. with no support, or understanding, from ANYONE! The side affects of this disease are getting worse, and I’m trying to get the treatment, but keep getting denied. No-one in my family talks about it, asks me about it, or how I’m feeling or what the dr said…NOTHING. I really feel so much Shame, because I contracted this from sharing a needle with my ex fiancé during the yrs of my addiction. I’m 8 years clean and sober…and still no care or concern, they don’t even wanna know about it, there ashamed. This is the first setting I’ve been able to talk about this, in my entire time since having been diagnosed. Maybe this letter will help them see it’s not me being lazy, or using this as an excuse…because I don’t. I would love to have the energy to live a better life. I have no life, I don’t get out much. I’m sick 90% of the time. I hate it. I went to school to be an addictions counselor, but I’m afraid to take the State test, because my memory is so foggy. And I haven’t started working on my internship because I’m afraid to make commitments, I can’t keep. I don’t know how I’m going to feel from day to day…which is why I don’t work. No one understands…I’m hoping this will open there eyes, from another’s suffering such as yours to see, this is Real. And it could kill me, if left untreated. I’m praying for the approval from my ins co., I’ve been denied over and over…it’s now in for another appeal…please pray for me…thank you. I will also pray for you

  • highmaintenance
    2 years ago

    Prayers to you NancyCat67. I was diagnosed 17-18 yrs ago. I took the Interferon / Ribavarin, twice with more harm than good. 7 yrs ago I received an liver transplant after 20-30 yrs of
    un-checked, rampart HePc & chirrious.
    I had & have my family’s support & my wife we from homemaker to caregiver after my transplant. Even though my family “supports” me, many, very many times I felt not understood or alone. My family’s tough guy, hero, breadwinner, “The Man” of the home, even though both my boys are larger than me.
    Hepc will take you only as far away from your family as you allow it. I started relying on the Lord after /at the time of transplant. It’s been tough & you sound like most hepc virus “heppers” at one time or other in the journey in life that’s has a past, but also has a now and an future.
    Listen to these folks here & FB that know what’s it like to have a dragon to slay.
    My reference to the help I recieved was at BAYLOR UNIVERSITY MEDICAL CENTER in Dallas, Texas Liver Consultants & Resaearch Department MAY be taken people for different clinical studies. I received a 24 Week program with Gillead Pharmiciticals which was the top one with “Harvini”, a two compound drug.
    Look into these web address that Meagan posted to you, lots of help there. Get into a HCV Support group. Feel free to post anytime. God bless

  • Meaghan Coneys moderator
    3 years ago

    Hi Nancypet67,

    Thank you so much for your comment. We are very happy you are a part of our community here at HepatitisC.net and please know that we are here for you. Firstly, I would like to send you a huge congratulations on your 8 years of sobriety. It is really such an accomplishment and I hope you feel some pride in your clean time. I know I feel proud of you. I am sorry to hear you feel misunderstood, unsupported, not heard by your family. Please know that you are not alone. We are here for you and support you. Experiencing intense feelings related to Hepatitis C is normal and common. Here is more information on various comorbid conditions – https://hepatitisc.net/living/comorbid-conditions/. Many people find it helpful to participate in support groups, especially when they perhaps feel unsupported by those around them. More information on support groups can be found here – https://hepatitisc.net/living/benefits-of-support-groups/. You mentioned having difficulties with your insurance company and being approved for treatment. Perhaps you will find these articles helpful – https://hepatitisc.net/living/paying-for-hepatitis-c-treatment/, https://hepatitisc.net/living/navigating-hcv-prior-authorization/, and https://hepatitisc.net/living/hepatitis-c-linkage-to-care-help-finding-care-accessing-treatment/. They provide information on how to navigate insurance companies and obtain quality care. Finally, I would like to mention that the symptoms you experience are normal and often experienced by those with Hepatitis C. This article provides information on ways to manage the symptoms, which you may find helpful – https://hepatitisc.net/symptoms/managing/. Again, we hear you and support you, and like you mentioned, we will pray for you. Please continue to reach out to us when needed. Sending loads of good energy your way.

    Warmly,

    Meaghan (HepatitisC.net Team)

  • Elizcj
    3 years ago

    Thank you so much for posting this letter. I have been living with Hep C for over 30 years, and some days the fatigue is so overwhelming I can barely get off the sofa. Other days, I may feel pretty darn good, and can take my dogs for a long walk. People often invite me to go places, and most often I turn them down because I just feel so awful. People look at me and say that I don’t look sick, and sometimes I believe they think I am faking it or just want attention or an easy excuse. After thinking about it, I decided to share your letter on my Facebook, and I disclosed to folks that I live with Hep C. It took a lot of courage for you to post this letter, and I just felt compelled to share it and let people know that this is how I feel too. Perhaps some of my FB friends may have Hep C themselves, and are to ashamed or embarrassed to disclose. Perhaps my situation can be of help to someone else. You described my feelings exactly. Thank you for helping give me the courage to share with others.

  • Dana
    3 years ago

    Elizcj I know all to well what you are saying. I dont personally have HCV but my i tend to a spouse that does, and I advocate and educate and speak on this issue as if it was my own, why wouldnt I…I live with it daily tending to him. Having a disease that is invisible is hard as you have stated sometimes people may think you are faking because you dont look sick. Thats why awareness and education is so important to help fight against the stigma that already comes with the disease itself. I love this letter as well it speaks volumes and truth. Hang in there and take one day at a time. My best – Dana

  • Kelly McNamara moderator
    3 years ago

    Hi Elizcj. Thank you so much for your kind words and for sharing your experience here with the community. We so commend you for sharing on Facebook. Know you’re never alone and the community’s always here whether it’s for support or just to talk. Wishing you all the best. – Kelly, Community Manager

  • Dee
    3 years ago

    Hello, while I have seen this letter before I still think it is excellent. Thank you so much for sharing. I tried to get close friends to read but of course people are always so busy. Thank you again, Dee

  • Courti
    1 year ago

    My siblings know I have this but they seem to forget that one of the symptoms if fatigue.They keep pressing me to get out and and or get more work done. I don’t want want to have to send them a print out to remind them. I might as well wear a sign or a Scarlet letter.And I don’t don’t want to do this. But can’t they just remember this??Guess not.And that wears me out.

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