A man trying to talk to his friend who is walking away and not listening

How Can I Convince You? Managing an Invisible Illness

How can I convince you that I am sick? Do you need a letter from my doctor, or is there some other proof you require?

It’s not always obvious if someone is dealing with a health issue like hep C. This is not exclusive to hep c, as there are several conditions that are devastating to our health that are not obvious at all. This can feed into the stigma that hep C and other conditions carry as a burden, when people are quick to judge and dismiss as either not serious or destructive to a person’s health and well-being.

The burden of an invisible illness

The fact is that most people will conceal their hep C status and tell very few, and sadly, too often, the response is not a positive one even with people we consider as being close. I have heard from many people over the years who spoke of how a parent, son or daughter, spouse, or other people were dismissive and disparaging to them when they suggested that they were feeling sick, tired like never before, and unable to do things like they normally do.

Managing invisible symptoms

Rarely do people present as being ill with hep C, unless it has progressed to advanced disease of the liver or affected us in the many ways it can over time, like diabetes, thyroid conditions, skin conditions, jaundice, neuropathy, and many others. The list is long, but many of these conditions are not visibly obvious and certainly not so readily seen or understood by most people.

Does any of this sound familiar to you?

I am sorry if it does, and know just how hard it can be when people you think will understand or be capable of having empathy demonstrate that they cannot, with you at least. I remember when I shared my own diagnosis with some close friends, and as it turned out, they were not as close as I thought. They avoided me, and it was hard to accept, and a great disappointment.

I think that they simply had no idea what to say in support, and because of that they just stayed away. This is the belief I chose to keep, and I was naïve.

The power of stigma versus support

I have seen how some of us are treated quite badly in the most awful ways, and it is heartbreaking to see. I am still of the belief that it is mostly due to lack of understanding more than just nastiness, although there are some people who can be both ignorant and nasty. I hope you have had and do have the gentlest experience with your friends and family. It really does make a difference, even to those of us with the thickest skin.

Hep C can be scary, and we need all the support we can find when we are dealing with all the issues associated. I hope your hep C experience is made less scary, with lots of understanding and all the necessary supports- free of judgement and criticism that we do not need… none of us.

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.


View Comments (2)
  • David56
    2 weeks ago

    Thanks Daryl,
    A really great article ! Some people live with several “Invisible Illnesses” as well as Hepatitis C. I can relate to your article so much. For some individuals who might live in area’s (rural) where people are not informed about Hepatitis C, it can really be a problem to disclose. It has been my experience that disclosure of HCV+ can be devastating. As well, loss of friends has also been devastating too. Often when one does not “Look” sick…it assumed that that person is just “not sick” ! Many times I’ve need to justify being ill. Often, due to stigma and how people might assume one acquires this illness, it is as though the judgement might be that, it is the individuals fault for using drugs in the past. From some people, it seems that often the question put to me was, “well, how did you acquire the virus ?”. After being honest and saying how I got Hepatitis C, the attitude really changed towards me. Even from friends and family too and Medical professionals as well. The stigma attached to Hep C is astounding at times to me. Being a Trauma survivor too only makes matters worse as that too carries a stigma. Thanks again for such a great article Daryl.

  • Daryl Luster author
    2 weeks ago

    Hi David56,
    Thanks for taking the time to write your comments, and hear how it resonated with you. These are things that most of us with lived experience have faced in varying degrees. The stigma around hep c has been one of the greatest challenges to overcome.
    It is not unique to hep c but the burden of stigma that the disease carries is destructive in so many ways. Stigma prevents most people from ever disclosing their illness, and anecdotally I believe it is north of 90% never disclose beyond their partner, spouse, or very close friends. This serves to isolate us, and that is never a positive thing. You, me, any of us have nothing to be ashamed about, and even if our past or present includes drug use we do not deserve to be judged as less deserving of empathy or respect and dignity. Thanks again for your comments and take good care friend!

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