It was easy to hide the pain when I worked full time and was constantly on the go. Hide the limp, hide the grimace, fake the smile, and no one knew how badly I physically hurt. These actions also hid how badly I mentally hurt too. The feelings of despair and failure that dogged my every waking moment—and still do. Then my mother was “discharged” (and I use that term loosely) from the nursing home and I was able to work from home in order to be a 24/7 nurse’s aid.
I went from sitting at a desk to being on my feet, barely able to sit for 20 minutes at a time. Running a Hoyer Lift, providing bath care and other personal cares, and assisting with physical and occupational therapy. This on top of a full-time job, a couple of side gigs (because the full-time job pays below poverty level), keeping the homestead running, and trying to manage the household. To say that my pain levels escalated and my depression spiraled down as my pain increased would be an understatement.
We’ll forget about my own medical care for a moment. I’ve forgotten about it quite nicely since my primary care physician says she’s not allowed to do anything for fibromyalgia other than the “tv drugs,” and those only work for 30% of the patients who use them. I live in a rural enough area that the specialists my city-dwelling fibro friends see aren’t available or are two or more hours away. So I have kept on doing what I do, which is taking care of everything and ignoring my pain.
Until I experienced being a full-time caregiver, I didn’t know how the medical system completely ignores caregivers altogether. One of the first things I learned since my mom came home was that my pain didn’t matter… my health doesn’t matter as a caregiver. My mom, who used to be my confidant, tells me she doesn’t want to hear about my pain or my worry for her health because it makes her feel bad.
So I live and work with invisible pain, in a place where my pain levels on that stupid 1-10 scale, range around 8-9 most days. I find silent, stolen moments where I’m by myself to cry because the head demons tell me that no one cares, and I don’t deserve care. That I’m broken and flawed.
Through it all, I have to still care for my mother and her 24/7 medical needs. So here is what I have learned about being a caregiver with invisible pain.
1. Cherish those moments for yourself and protect them like a mother bear protects her cubs.
When you have quiet moments that you can use for yourself, do so. Find something, even just a cup of tea, that you can do for yourself and enjoy without anyone else requiring your energy. Focus on your own projects, and if you don’t have the energy, then focus on relaxing. Curling up in bed with a book, or just curling up for a short nap. Enjoy the moments you have to yourself because they are what will refill your well and allow you to continue caregiving.
2. Tell your head demons to take a hike.
I know, easier said than done. If you can’t tell those voices in your head to get lost, then at least be able to identify them. Saying to yourself that “this is my depression talking,” at least puts space between it and your daily life. Remind yourself that you are loved and you are seen. Remind yourself that you matter.
3. Seek support.
Again, something else that’s easier said than done, I understand. It doesn’t matter if that support is a friend, a loved one, or venting on Facebook. Make sure you know there are people, or even just one person, who has your back.
Most of all, remind yourself daily that you are doing the best you can, both with your own personal care and the care you give your family member. There is nothing wrong with taking care of yourself or even knowing when you’re at your limits. Each of us is doing the best that we can, no matter our illness, visible or not.
Mary Caelsto lives on an acreage in the Ozarks with her husband, her disabled mother, a flock of spoiled chickens, opinionated horses, and the not-so-itty-bitty-kitty-committee. She’s a technical goddess who loves helping authors and entrepreneurs with the online aspects of their business and dreams of a day when invisible illnesses will no longer be stigmatized. Learn more about her work at http://unscramblet.com.