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.
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 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.
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.