For most of us, our lives change quite dramatically when diagnosed with arthritis. Living with arthritis can mean living with floods of pain, limitations, changing habits, new priorities and guilt.
One of the biggest surprises from my arthritis is the unending guilt. This guilt comes in so many forms and often catches me off guard. I’m sure if you have arthritis you recognize this easily. You immediately know what I’m talking about. Unfortunately many of us probably experienced it firsthand. If you haven’t, you may not understand. So let me try to explain it further.
Guilt surrounds every aspect of our lives.
The guilt of no longer meeting our own expectations.
The guilt of being dependent on medication.
The guilt of not being able to do as much. To need breaks. To not being able to be as social.
The guilt of needing help.
The guilt of how much money our arthritis consumes.
The guilt… the guilt… the guilt…
Arthritis strains every relationship we have.
When it demands more attention, that’s less attention we can give to our loved ones. When it demands more money, that’s less money that can go to Christmas gifts or traveling. When it demands we sit down, that’s less time we spend helping at family gatherings or with our friends. When it demands we stop doing certain things all together, those are things we have to ask for help with. Arthritis is demanding. And even with the most understanding support system, it does not ease the guilt. Because we don’t want to let arthritis take those things from us. We don’t want to give things up. So of course we don’t want others to give up those things either.
It’s so easy to let the guilt win. To let it devour us whole. To bury us and let it take what little confidence the arthritis has left us with. I choose not to. But it’s a difficult choice. And a continuing process.
Our society is focused on usefulness.
People are defined more by their jobs than who they are as a person. This instills a need to produce, to earn, to contribute. This is ingrained in us from very young. From the time we begin getting graded, we feel the need to meet societies expectations.
A friend of mine recently posted a picture of a page in a book on Facebook and it was like she was speaking to me. It turned out to be an excerpt from Culture Care by Makoto Fujimura.
“This is one of the effects of living in a culture where usefulness is the highest virtue. We are too prone to see a human being or human endeavor as worthwhile only as it is useful to the whole, whether that be a company, family, community, or even a church. The corollary is that individuals who do not meet this standard are “other,” an attitude that results effectively in their exile from the functioning, “normal” world. Those who are disabled, those who are oppressed or weakened, or those who are without a voice are soon implicitly regarded as useless, and then as disposable.”
This so completely sums up my feelings on the topic. The guilt is not just that we want to be “normal,” it’s that we don’t want to be left behind. We know that those who a useful in our society are more highly regarded. And we do not want to cast aside from our life.
I have no real solution to this feeling. The only thing I can say is that not everyone feels this way. There are people in this world who value kindness and goodness above productivity. And if we are lucky, we will find a way to surround ourselves with those people. And if we’re even luckier, we will begin to think that way as well.