#Fearless Family Writer
I suffer migraines.
That sentence could end with any sort of chronic illness or pain. Arthritis. Chronic Fatigue Syndrome. Fibromyalgia. Cancer. The list goes on. I suffer…
Many of us use this terminology because of the danger of using a different one. The real sentence is: I cope with migraines. You cope with pain. You cope with fatigue. You pick yourself up day after day and you get done what needs doing. You do either the same amount as someone who doesn’t deal with chronic illness or pain or you manage what you are capable of at that point in time. The reason “I cope” is so dangerous is that it begins a flood of well-wishing that becomes a tipping point into expectation.
“You’re doing great!”
“I’m so glad to see how well you’re doing!”
“It’s fantastic how well you’ve managed to keep up!”
“We’re so proud of how well you’ve done!”
These feel great at the start, but after a while they become a burden. Soon it can become:
“What happened? Last week you were able to go out with us.”
“You met the deadline last month.”
“I thought you were getting better.”
We cope because we have to. We manage because we have to. For those of us with chronic conditions, we do this because we have no other choice. It is sad, but true. For every article about how brave we are, about how we overcome, there’s one of us sitting back, head in her hands, wondering how she’s going to make it another day and not knowing who she can talk to.
You can call me brave, but there are days I do not feel brave. There are days I want to scream and days I want to cry. There are days I want to give up and hand over the keys. I have had serious thoughts of walking in the hospital doors and begging that they take over for a week because, “Haven’t I managed long enough?”
It may seem uplifting to tell your friend that they seem to be doing better, but they aren’t always the kindest words to give. Many of us maintain because it’s the only option we have. Maybe we’re out of sick days. Maybe we have none to begin with. Especially in these days of uncertainty of the future of health care, we have to be extremely careful. Just because I wake up and get to work every morning doesn’t mean each morning is easier than the last.
Instead of telling your friend, “You must be doing better,” consider reaching out to them with an offer to help out. Don’t be pushy, but even a, “Want me to bring by dinner rather than going out this weekend?” can be a lifesaver. Volunteer to take your brother out to grab his weekly groceries. You know your friend has to pick up her cat litter each week, so maybe pick it up for her.
The small things help. The small things do more than you could ever imagine… because it’s the small things that break us. It’s the dishes that pile up in our sinks because we needed to be able to get through the shower instead. It’s the litter box because we couldn’t manage to bend over. It’s the laundry piling up because our hands were shaking too much.
To manage the big things like working so that our lights stay on and we can feed ourselves, we have to let those little things that no one else sees fall through the cracks. Unfortunately, we see them. They stare us in the face each and every day. These are the hardest parts of the ‘invisible illness’ sometimes. The outside world sees the strong face, but we walk in the door each and every night to be faced with the reminders of where we fail.
So remember… we cope, but we never see the results of coping. Coping does not equal better.
Thank you to Leigh for sharing this wonderful and informative story!
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