What’s really happening … is not always obvious on the surface.
I was recently asked to volunteer for something, and when I declined, I quickly felt the judgmental stares and gossiping whispers from the group directed toward me.
I don’t volunteer anymore.
At least not in the way most people want me to. I don’t really commit to anything anymore either.
It’s not that I’m apathetic. Or that I’m lazy or selfish or just don’t want to help out. I really miss getting out there and serving others. And I feel a tremendous amount of guilt when I have to say no.
But I’ve had to re-prioritize things in my life because of what some call an invisible illness (things like MS, Lupus, Rheumatoid Arthritis, Depression, Diabetes and Digestive Disorders).
It’s nothing new. I’ve been living with this chronic illness for over 20 years and it’s affected me in varying degrees. But for the last few years, it’s been worse than ever before. And so it seems like I have to be saying no to things even more often.
The thing about it, though, is that I’m still very visible. I’m committed to being involved in my kids’ lives. So I still travel to ball games and sit on bleachers for hours or in an auditorium for an entire day. And I still socialize (at least somewhat) and laugh and try to be enjoyable to be around. Because no one wants to be around people who are grumpy. I fake it pretty well (how I’m actually feeling inside, I mean) at least most of the time.
But then I get home from a game or a play or some other event, and I fall into bed and writhe in pain, crying for hours, not able to sleep that night. And then I could be that way for days.
I’m not looking for pity. Everyone has struggles. But those people who asked me to volunteer don’t see what’s really going on. They see me as uncommitted and selfish; someone who won’t give of her time.
And that’s just not the case for me nor for the thousands of people who live with these types of illnesses.
I spent many years, when the pain wasn’t as bad, volunteering … coaching my son’s teams, volunteering at church and at the local food pantry.
These days, when the pain has been much greater, I’m more than happy to write a check to a good cause or help with publicity or the like if I can do it from my bed.
What’s especially hard is when you’ve told someone about your illness and they’re sympathetic, but then they forget you even have it … because when they see you, they see nothing wrong. Because … it’s invisible.
Is it worth it then? Being visible and then being judged? Absolutely. Hard? Yes. Unbelievably so at times. But definitely worth it.
I sort of hit rock bottom about two years ago. I was so utterly sick of the illness and its limitations. My parents had organized a trip to Yellowstone and the Grand Tetons for all of us kids and our families. I was feeling so badly at the time that I had considered not going. In the end, though, I went and the trip was amazing but so hard on me physically. And then when we returned home, we were greeted with several difficult trials, one right after the other.
I was so tired, mentally and physically. And I just wanted it all to end. It was a pretty dark time for me (you can read more about it here: ‘Even the darkest night will end’).
But then I had an experience that completely changed my perspective, and over the next several months, it helped change my attitude. I decided I would keep going “until it killed me.”
And it nearly has on a few occasions.
But what it really did was help me realize what’s most important. And for me, that’s God and family. Everything else takes a back seat.
These days, I choose to live by this motto: “Do what you can, with what you’ve got, where you are.”
I now work from home. In my bed. (And I’m very grateful to an understanding and supportive boss who has helped make this possible).
When I’m not working, I’m resting. In my bed.
I’m resting so that I can go to church on Sundays and to my kids’ activities throughout the week.
When I’m resting, though, I can still do other things when I feel up to it. For example, I volunteered for awhile as our church’s Facebook page manager. Something I could still do while in pain in my bed.
So I’m not out there selling cookies at a bake sale or taking care of the babies in the church nursery. Those things quickly take a toll on my body. But I am doing what I can, with what I’ve got, where I’m at.
If you were to meet me in public, you would have no idea what’s going on inside of me. And I would have no idea what’s going on inside of you.
What’s really happening … is not always obvious on the surface.
So stop it. Stop judging people. Everyone’s struggling with something.
I try to remind my kids of this when they say they don’t understand why this person did or did not do something they thought they should.
“Look at me,” I tell them. “You just never know.”
“We simply have to stop judging others and replace judgmental thoughts and feelings with a heart full of love for God and His children” (Dieter F. Uchtdorf)
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