When Others Don’t Understand Your Hep C

Hepatitis C brings a variety of issues to deal with. When others don’t understand your hep C condition it often hurts.

Hep C patients try their best to keep up with life while dealing with the disease and often keep struggles and feeling ill to themselves. When others say, “You don’t look sick” I’m sure they mean it as a compliment and really, no hep C patient wants to look sick, or be sick at all.

Personally while I was full blown into my first hep C treatment with interferon injections and dealing with horrific side effects, someone said “You don’t look sick,” but added I wasn’t having a hard time with the disease or treatment. I am ashamed to admit I fired back a cutting answer, “Well, I don’t go outside and shuffle along in my bathrobe with a washcloth in my hand,” and I began a short list of what I was “really” experiencing.

When going through hep C treatment and recovery it can be very tiring, frustrating, coupled with a mix of emotions no one understands unless they’ve gone through it. So when you’ve just come through the fight of your life with hep C treatment and going through recovery, it’s a double whammy to hear a thoughtless statement, “Oh, I thought you’d be over that by now.” Boom. It hits you in the gut!

To be honest, recovery is a bit of a mysterious experience because its factors and timeline are somewhat different for every hep C patient depending on different aspects like; what treatment meds were used, the length of treatment, what condition the liver was in prior to treatment, other physical conditions present, and so on.

The goal for every hep C patient is to get rid of the virus and get back to a normal life. And I might add, as quickly as possible. Who doesn’t want that? Personally, I came to believe that no one would ever fully understand what I was experiencing unless they had gone through it themselves, and I needed to give others grace regardless.

But what helps the hep C patient? When I was going through my treatments there were no hep C support groups out there at the time. I longed to talk to others who had come through it and survived. I needed to talk to hope with skin on. Even if well meaning family and friends, and even at times medical professionals did not relate to what I was going through, I knew those who had been through the battle with hep C would understand best.

That is one of the many reasons I felt God leading me to develop the website Life Beyond Hepatitis C and our online support group, Hep C Warriors Friday Forum Support Group. Hep C patient/warriors need a place where they are loved and understood no matter what they are experiencing.

Hep C knows no bounds and goes beyond race, sex, financial means, and more. So a hep C patient no matter where you are from or your background, we are all called to the same challenge and goal. Hep C patients are Hep C Warriors no doubt.

I am of the opinion that no matter what a person goes through, be it hep C or some other disease, financial or relationship issues, loss or gain, we can learn something from it and use it for good, especially when we give our all to Christ. God doesn’t promise life will be easy, but He does promise to be with us and help us through it.  I personally would rather walk through a dark valley with Jesus by my side than alone.  With God, He understands us from the inside out and loves us unconditionally when no one else does.

Barbara Johnson once wrote this truth, “Live for today but hold your hands open for tomorrow. Anticipate the future and its changes with joy. There is a seed of God’s love in every event, every circumstance, every unpleasant situation in which you may find yourself.” 

If you or a loved one have hep C, I hope you know you have a safe place here where others care and understand what you’re going through.  And when you come across others who mean well but may say things that sting, give grace and kindness back instead, it’s the best medicine you can give yourself.

 

Have you ever had your feelings hurt by others about your hep C, treatment or recovery? How did you handle it?

(This entry was originally published on Life Beyond Hepatitis C October 29, 2014. It is reprinted with permission.)