Why Do I Feel So Awful?

Why Do I Feel So Awful?

In recalling the early days of my hep C experience, I am reminded of just how awful I felt for years before I knew it was caused by hep C. Multiple visits to the doctor and a few hospital stays that resulted in no answers made it all the more awful. The not knowing was hard on my attitude, making it harder with each question about what was wrong with me. I heard from doctors and nurses that I was fine and even on one hospital stay, a nurse asked why I was there because I was healthy. I was not healthy and did not feel well at all.
Like most people, I don’t care for hospitals very much, so why would I want to be there?

When people doubt your symptoms…

I learned that this pattern of generally feeling awful in all the ways is a classic example of hep c symptoms. This went on for years before my diagnosis. Sound anything like your experience? I know some people were tested years ago and for one reason or another decided to not treat-generally because of the horrible side effects and the poor SVR rates (curability) associated with the older treatment regimens. As I have said before, many were told they were fine and wouldn’t need to worry about it because it took so long to cause damage to your liver. The liver being the main focus until recent evidence, not to mention what we knew in the community. All of those other symptoms that arise, even in the absence of liver damage or very advanced liver disease.

If you feel sick, you are sick

No matter what anybody tells you or says about it being “all in your head” to quote what many heard for decades or longer, if you feel unwell – you are. The message was that you were imagining things or making them up so that you could get sympathy or even worse: to use as a way to acquire drugs.
Stigma bleeds into this, as it does with hep C, at almost every point in the journey.

Women are even more acutely familiar with the “in your head” nonsense, and as I have learned from people it was not just from male doctors but women doctors as well, which is incomprehensible on the surface. I have heard about how women were dismissed as being hysterical or that their illness was imagined and here are some pills to keep you calm.

We face this stigma far too often

This is the same rubbish that people too often face with their hep C care. I am not saying that all doctors act in this way by no means. We can all point to the good doctors we have known and mostly they are thought to be good doctors because they show empathy and most importantly listen to their patients.

In closing, I want to say again that if you feel awful, it is real. It may be physical and it may be emotional but how can we truly tease the two apart so readily when they are inextricably linked. Some people will get accustomed to feeling unwell, but generally, we know if something is wrong. Don’t let anyone, and that includes doctors, who may be dismissive, push you to the margins and in the process deny you the care you need and deserve.

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 (5)
  • Daryl Luster author
    7 months ago

    Hi EllerMay66,
    I am lifted up by your great news that you are getting closer to having your life back! Patience is not always my best virtue either but you will get there! All the best with your next test next month and I suspect you will remain hep c free yahooooo!

  • Daryl Luster author
    1 year ago

    Hi EllerMay66,
    As I tried to speak to the things that many of us have felt, I am glad it connected with you. I am also so happy you have found someone who you trust and cares about the whole you. NP’s are the real backbone for our care, where they are available. I am so sorry to hear of the loss of your Sister, I know how that is with the loss of my brother over 20 years ago. My hope is that your last test will spell the end of the virus and look forward to hearing that the virus is gone for good! Like you said, doctors are rushed off their feet with so many patients and rarely have the time to spend with us to answer all the questions or act like they care, and also as you said; remember who we are and what our case is like. Thanks again for writing to say you connected with my words, it is not always evident at my end.

  • EllerMay66
    1 year ago

    God bless you for writing this ! iv been treated am now negative still have one more blood draw to go end of this month. iv experienced so so many bad Dr trips. I screamed for 20 yrs. there’s something wrong. I got the gamet of excuses…your fat go home and loose weight..you smoke stop smoking..your depressed..your bipolar…ECT. the commercials for hep C even make me angry. saying symptoms are mild like having the flue and take yrs to surface. it didn’t for me. I was overwelmingly fatigued months after being infected and knew something was terribly wrong. spent thousands of dollars to never ever get an ANSWER. then my Sister died. and I went to donate plasma in her memory and was told I was positive for Hep C. it’s very very hard to find a caring doctor that is not over run with patients and can actually even remember what your situation is from one visit to the next. it’s taken me 20 yrs. but I finally have a great one. and she’s not even a Dr.she is spec.Nurse practitioner!!! yes! always listen to your gut feelings!!!!! ❤❤

  • CaseyH moderator
    1 year ago

    Hi EllerMay66! Wow! What a story, thank you for sharing! First of all, I’m glad to hear you connected with this article! Second of all, I’m so sorry that you had to endure so much, not only with symptoms directly related to your HepC, but in the long, difficult journey you had to take just to receive a diagnosis. I’m so sorry to hear about your sister as well. You’re so right, it can be so hard to find a caring and supportive physician who is also a good fit for your situation. I am SO glad to hear that you’ve found a provider (Nurse Practitioner) who works with you and supports you in the way you need and deserve! Thank you for sharing with us, and YES! Definitely trust your instincts and continue to be your own advocate! We’re here for you too every step of the way whenever you need an extra hand! -Casey, HepatitisC.net Team

  • EllerMay66
    7 months ago

    Thanks so very much!!! still here!! yeah!!! LOL plugging along. still weak but still NEGATIVE! we check again next month in June. I’m hoping energy will return soon. im being very good with my food and really trying to get back in there to this thing I call my life!!! I’m bad about being patient. LOL wish everyone here the best! this sight has been so uplifting to me I can’t say enough. THANK YOU A MILLION TIMES FOR BEING HERE!❤

  • Poll