Sympathy vs Understanding: Others Simply Can't Relate to My Life with RA
Recently, I wrote about a day where I was just over it. I didn’t want to deal with another aspect of living with rheumatoid arthritis (RA), and I felt so frustrated by the fact that I had no other choice.
That led me to think about how different it is to be an RA patient. And while my friends and family members can have sympathy for my experience, they just simply cannot understand.
Loved ones don't know what I go through
They can’t relate to something they haven’t experienced. They can’t relate to something that has changed every single minute aspect of my life, day in and day out.
I have lived with the symptoms of RA since childhood.
Today, I am a wife and the mom of a toddler and a 3-year-old Pomeranian pup. I am moderately active, although not nearly as I’d like to be.
There hasn’t been a day I haven’t thought about my RA
Some days, I manage my RA symptoms just fine. I want to say I manage them without a second thought, but that would be a lie.
There hasn’t been a day of my life that I haven’t thought about my RA, but that’s just something we’re supposed to get used to, right? Something we’re supposed to be fine with.
RA impacts many aspects of my life
I wish other people could live for 1 week in my shoes. Is this unkind? Perhaps. But is it reality? Absolutely.
When my husband watches me make three trips up and down the stairs to carry the laundry and forgets how bad my knees will ache afterward, I get frustrated.
He's been my caretaker and my advocate for nearly 7 years. And yet, he's never lived with RA. In fact, he rarely struggles with aches or pains of any sort. He just can't relate.
When my daughter wants me to crouch down next to her time and time again, I grimace and do it because she's 2 years old and doesn't understand RA. But I know I'll pay for it later. This makes me wince inside.
When I tell my pup that I can't go for a walk because I am in too much pain, I know he can't understand. When I ask the dog-walker to take him, I see the look - "Why can't you? Are you lazy? Why even have a dog?"
When I make plans with a friend for dinner and suggest carry out, it's not because I don't know how to or don't want to cook. It's because the extra physical energy of shopping for items and preparing and cooking the meal will cause pain and exhaustion which will take away from the time and fun we can have together.
Only other RA patients can truly relate
Living with rheumatoid arthritis means that every decision, every movement, every moment of my day must be thought about a little harder, and planned out a little extra.
I often feel that, literally, only other RA patients can truly relate. The way my brain works, the lists I make, the precautions I take - it consumes more energy than I can ever adequately explain.
Add in the sometimes debilitating, always present fatigue that comes with my RA, and I feel like a shell of the person I could be.
I don't blame them
This is something I wish others could understand. This is something I wish my friends and family could keep at the front of their minds.
I don't blame them for not being able to. They can sympathize. Sometimes they can empathize, but they just can't ever really understand.
So I take a deep breath and, again, remember that I'm balancing this all the best I can.
Do you ever feel this way? I'd love to hear your experiences below.
Have you managed RA fatigue better than you used to?