By Susan Simon Moderator
My name is Susie and I am one of the moderators here at HepatitisC.net. I was diagnosed with HCV in the early 90’s and will share my story at some point in the near future.
I wanted to make this post today because I remember being newly diagnosed and feeling terrible. I remember how many people told me that I looked fine and I remember how that made me feel. While it was kinda nice to know I looked ok, it hurt to think that people were devaluing and perhaps questioning just how sick I was. I think many people with chronic illnesses have experienced this mixed bag of emotions.
In surfing the web I came upon a letter written by a young woman named Bek Oberin. Bek lived in New Zealand and was diagnosed with chronic fatigue and fibromyalgia, if I remember correctly. She wrote a letter entitled “To Whom It May Concern” explaining to people how she felt. I wrote to her and she gave me permission to change her letter to make it more appropriate for hepatitis C. Here it is:
TO WHOM IT MAY CONCERN
Having hepatitis C virus, as with any invisible chronic illness means that your life as you once knew it is changed. Just because you can’t see those changes doesn’t mean they are not there and felt by those of us who live with this virus.
Most people don’t understand hepatitis C and cannot imagine what living with a chronic illness means. With the hope that there are some who wish to understand, these are some of the things I’d like you to know about us.
Please understand that being sick doesn’t mean we are not still people with all the same emotions that healthy people experience. Some of us must spend our time carefully so that we conserve what little energy we possess. If you visit we may not be much fun, but we still love and appreciate company. Some of us worry about our jobs, schooling and families. Most of the time we’d like to hear what is going on in your life as well as sharing our lives.
Please understand that one can be happy but not healthy. When you have the flu you feel fairly miserable, but we’ve been ill for years. We can’t be miserable all the time. in fact most of us work hard at not being miserable. So when you speak with us and we sound happy, it means we are happy. That’s all. It doesn’t mean we are not sick, in pain and extremely fatigued, or that a miracle cure has been found and we are all healthy once again. Please don’t say, “Oh you’re sounding better!” We are not sounding better, we are sounding happy. Feel free to remark about our happiness. Just don’t assume that it means we are better.
Please understand that being able to participate in an activity for 15 or 20 minutes, doesn’t necessarily mean that we can participate for 30 minutes or an hour. It’s quite likely that doing that 15 minutes has exhausted our resources and we may need time to recover. Remember the last time you played a swift game of tennis or softball. You couldn’t repeat that feat over and over again. This applies to every thing we do.
Please understand that chronic illness is variable. It’s quite possible that one day we are able to walk to the park, or shop in the mall, while the next day we may have no energy at all. Please don’t say, “But you did it yesterday.” If you want us to do something, just ask and we will tell you if we are able. If it is necessary to cancel an appointment with you at the last moment, please don’t take it personally. There are days when we feel great and all of a sudden that changes and the fatigue is overwhelming.
Please don’t ask us how we got this disease. There are many ways to acquire hepatitis C. Some of us made a foolish choice to experiment with IV drugs when we were young and invincible. Some of us were born with hemophilia and needed to use blood products to stay alive. Some of us were given blood transfusions before 1992. Some of us are veterans who fought proudly for our country and some of us are kidney dialysis patients as well or may have received an organ transplant years earlier. Many of us have no risk factors at all and do not know where we got hepatitis C. If we wish to share our medical history with you, we will. Please don’t be afraid to hug us, kiss us or hold us. You cannot “catch” hepatitis C from us unless there was a mixing of our blood with yours.
Please understand if we tell you that we have to sit down, lie down or take our meds, that we have to do it now. Chronic illness doesn’t wait for a convenient time. It does not feel good to have to stop what we are doing to tend to our health. Remember that we didn’t ask for this. We mourn for our lives before illness, when we were free to pursue all our hopes and dreams. We hope you understand.