Rejection and Other Negative Experiences with Hep C

Feeling rejected since you came out about your hep C? It seems to be a very common scenario to those facing liver disease. So far, I have not been able to figure out why, in all my years of dealing with and supporting others with hep C and liver disease.

My long-term symptoms after hep C

I used to write it off as a lack of knowledge about the disease in general.  And yes, that is high on the list, but for myself, I think it was the fact I looked okay; I didn’t look sick.  Sure, I was tired and sluggish, but anyone can have days like this. I experienced forgetfulness, muscle & joint pain, and random anger caused by fighting hepatic encephalopathy.

My negative experience

But, the outright feeling of disrespect was hard for me to not get feelings hurt or angry over. For example, I was on a trip with someone. This person knew of my condition and I explained the nerve pain and lack of mobility at times, my brain fog, etc.  Well, during the flight, I with was trapped in between two large people, with my legs in an awkward position for long time. This person I was traveling with got up from her seat; I expected them to offer me assistance getting up to my feet, but when they headed on out, I was left to find I had no way of gaining strength to get up from my seat. A nice gentleman from a row behind stepped forward and offered me his arm to help me to my feet. Embarrassed, I began to tear up.

I thought to myself, "How can anyone be so rude and uncaring?". After holding the line of the plane, I finally met up with this person at the end of the ramp and they joked why it took me so long. Wanting to scream out in pain and frustration, I just said I had not been able to get up from my seat.

When people assume we're okay...

We all have gone through something similar, where people in our life take us granted; They assume we are okay and can still do everything we once could. Because I was open and honest about my condition, I was still shocked at the lack of compassion. Yes, I was stunned at the lack of empathy and frustrated, along with being embarrassed that a total stranger had to come to my rescue.

For myself, I hide a lot of pain I am in - probably 99% of the time. On this flight, my pain did trigger emotions from me that at that point in time, I didn’t care if I showed it or not to this person. Tears in my eyes as I looked at him and basically brushed off the cold, rudeness I just experienced.

Setting expectations

There are no magic answers to get the support you need in fighting hep C or liver disease. Not everyone is going to understand, and to a point, we can’t expect them to either. We must learn to express more often our discomfort and maybe with that, it will bring more empathy. Otherwise, we can’t expect them to read our minds. And there will always be those people that no matter how much we share and educate about our condition, they will never fully understand or have the compassion we are looking for.

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