Take Care of You!
A common thread in our community discussions is the lack of family understanding and support you might face when you live with a chronic condition.
"I'm fine" doesn't mean I'm ok
It’s easy to feel betrayed as the person living with the condition when your loved ones don’t seem to care enough, not ask how you are doing, or not allow space for an honest response.
It can lead to a lot of “I’m fine” answers.
Other people don't always understand
Let me generalize here a bit. People know how to show sympathy when someone is diagnosed with cancer. People understand the pain of a broken limb and the severe bruising that might follow a serious car accident. People may even empathize when someone they know has lost their job.
But sometimes, it’s hard to have sympathy, understanding, or empathy when another person looks healthy and doesn’t seem to be struggling. They look fine, so they must be fine. Right?
Turning to family for support
In my own family, my mother gave me support before, during, and after each of my diagnoses. She had already been diagnosed with lupus at the time and had an understanding of how invisible diseases are deceptively complicated. She gave me her unconditional love and empathy.
My sibling, aunts, uncles, and cousins never ask how I’m doing. I have one cousin who occasionally calls to check in, and he listens to any response I might have to share. He’s unique in the family, and that’s quite special.
I have one aunt — coincidentally that also has lupus — who has shared words of encouragement. She tends to do this after I’ve publicly shared about struggling with a particular issue. It might be struggling with health or struggling with life circumstances. Her response has always been the same regardless of the source of the extra stress, anxiety, or physical impairment.
"Take care of you!”
How I practice self care
I appreciate this. But what does this mean? For each of us, this could mean different things.
For me, taking care of myself involves some of the following:
Rest when needed
Give myself permission to rest or take a nap when I need to. With that, taking care of myself is also going to bed at a decent time (not 2 am) which helps too.
Process my emotions
Allow myself to cry when I feel upset. Doing so seems to clear my head and reduce the intensity of any fear, sadness, or anger I might need to express at the moment. I can come back to the issue and deal with what was at the root of the underlying emotion.
Maintain a healthy diet
Feed myself properly nutritious food. A couple of slices of cheese with coffee may not be the best choice for lunch. I feel much better mentally and physically when I eat a meal with protein and fresh produce.
Avoid food that makes me feel bad
Avoid eating “comfort food.” I have learned, through unfortunate personal experiences, that food containing sugar, high carbohydrates, and processed items like lunch meat can all affect my ability to stay focused. For me, candy turns on the brain fog and will send me into a tailspin of trying hard to avoid falling asleep in the middle of the day while chasing a sugar high.
Stare off into space if that’s what my brain and body need to do for a little while. It’s perfectly okay to do nothing!
Listen to music
Put in my favorite CD — yes, I still have my collection of hundreds of CDs in their original packaging, complete with inserts — and either chill to soothing sounds or sing the horn parts out loud like nobody can hear me. My husband gets somewhat amused at the latter.
Move my body
Engage in physical activity. Movement is one way to treat my body nicely, whether it’s gearing up and taking the bicycle out for a spin or putting on tennis shoes and walking around the block. Staying sedentary is hard on the body; joints, connective tissues, and muscles must be moved around regularly.
What does “taking care of you” mean to you?
Did you have difficulty receiving a RA diagnosis?