The Fallout Guide for Hep C: Survival Mode
This is part one of a six-part series called The Fallout Guide for Hep C. Six emotional components of living with hep C which are important to address to maintain our sense of self as we traverse the difficult hardships ahead.
As I steadily approached the need for transplant, and my income became limited, I stopped thinking about cool things, hobbies, and travel. I didn’t have much time in a day, nor the financial resources to do much. So I gracefully lived at the poverty line and made the most of what low/no cost things I could. When we enter survival mode, anything outside of the necessary things fades away in importance.
Using our energy wisely
The further one dives and survives, the more one is willing to abandon. Especially in my last few months, I recall the distinct restriction which comes with being a spoonie with but a handful of spoons. A Spoonie is an adopted term for people who live with chronic condition(s). The spoon theory states that each day we’re given a certain number of spoons, and each thing we do uses those spoons. Some people could start with a hundred, but many spoonies usually have only a handful or so. Say you have ten spoons: Wake up- 1 spoon, brush teeth- 1 spoon, shower- 1 spoon etc… It’s easy to see how limited a day can be.
This is survival mode at its most extreme.
There are times when we abandon the normal assurances of life. Times when we allow ourselves only the room provided, because stepping out of that room is dangerous. I often look back to when I decided to join my family and go on a cruise ship, only to find myself in the hospital with sepsis.
Support is critical
This survival mode can alienate Spoonies unintentionally. This is why it’s imperative to form a support network with whomever you can trust. Because at our weakest moments, they can help carry us. The challenge comes with finding a way to maintain a support network when you only have so many spoons to spend in a day.
“Friendships are a little like backyard gardens. We plan to tend them. We just always seem to put it off till next week.” In times like this we often find ourselves losing friends, not because of anything that a Spoonie may have done, but because sometimes people have a hard time understanding, empathizing, or dealing with the emotional fallout.
The struggle is accepting a friend who is in (near) constant pain. The struggle is seeing a friend who is dying, who is gravely ill, who is vulnerable and understanding that all you need to be is there.
Vulnerability is the key
As Spoonies we face a serious question as to when to be vulnerable. Because that vulnerability isn’t always readily accepted. As patients with Hep C (HCV), it bears even more vulnerability, because we must bear the burden of stigma.
Well, this certainly sounds depressing doesn’t it? It can be depressing, and it can help further depression as it did with me, as I failed a treatment, and found one my closest confidants to be distant and eventually non-existent.
The hurdles are high, but to those friends who choose to jump…Their inspired choice to simply be there is such a strong force that those who abandoned the attempt fade further from memory. Even when they are close to us. Seeking a larger support network is key. It’s incredibly hard for one person to shoulder the burden of HCV, but for a family, a large friend group, online support groups, it can become easier to shoulder.