My chronic illnesses impacts my day-to-day life. I can’t remember the last time I didn’t need accommodations or help because of a symptom, so it’s become a normal part of my life to disclose my illness.
It’s led to people being a lot more understanding if I can’t show up or do certain things. Personally, I feel so guilty when I feel that I’m letting people down, so laying out my limitations from the get go also gives me a piece of mind.
What’s your reaction when someone says they’ll “pray for you to get well” but your illness isn’t going anywhere? You know nothing will change as a matter of fact it will get worse.
“Thank you, but my condition is chronic.” It’s hard enough to accept that my illness is permanent and likely isn’t going to get better; having people say they’ll pray for my health somewhat feels like a slap in the face.
Just yikes! It often feels like prayers for healing are cure-focused when there is so much more to chronic illness than a cure. I like to use a phrase that I picked up from Eli Clare in his book Brilliant Imperfection: Grappling with Cure which is, “Wishing you less pain.”
The sentiment reflected there is so important because it relays a hope that you’ll be back to your baseline, not a “cure” or some sort of unattainable model of health.
Like many others with chronic illness, I have advocated for finding new language that prioritizes acceptance of our illnesses, since for many of us, just accepting and living with our health the way it is, is a huge part of the struggle. I choose to always look on the sunny side of things.
Even when we aren’t perfectly well, our bodies are still doing countless amazing things.
My body is doing thousands of amazing things all of the time, and just a few of them at a suboptimal level. For that and each good day I give thanks! It has always been easy to come up with gratitude when I felt well, but now I began to feel that gratitude even when I feel worse.
I can say Thank you!
Thank You:
My retinas were still converting light into images that my brain understood. My lungs were still bringing in oxygen and releasing carbon dioxide. My skin was still protecting my organs from the outside world. My white blood cells were still preventing infection. Even when I was in pain, I was alive and in the presence of God.
A Hebrew prayer I know reads:
Blessed are you God, Sovereign of the universe, who made me according to your will.” (In other words, thanks anyway.)
In the span of a mere page in the prayer book, the blessings of Birkot Hashachar allows us to start each day in gratitude for what we would otherwise take for granted — waking up, having clothes to wear, and possessing the ability to see the world around us. These are all profound thoughts, and often not first on our minds when just trying to shake off the fog after a night’s sleep.
Most importantly, these blessings help us remember that we live not only as individuals, but within a community as a child of God. Focusing on the light with our ongoing goal of tikkun olam—fixing the world and bringing about change.
“Blessed are you God, Sovereign of the universe, who made me in Your image.”
This emphasizes the fact that we are all created b’tzelem Elohim—in the image of God.
Can you think of a better way to greet each day?
As a woman in her forty’s , outwardly healthy-looking, remaining in my chair to sing the anthem or a church hymn. I thank God for not looking like what I have gone thru. But having a chronic illness it has crossed my mind. Would my community think I was lazy? Entitled? Irreverent?
The pain and dizziness that kept me in my seat that first year was a symptom of the chronic illness I would be diagnosed with a few years later called ankylosing spondylitis. Ankylosing spondylitis, part of a family of diseases known as seronegative spondyloarthritis, or axial spondyloarthritis, is a form of inflammatory arthritis that primarily affects the spine and sacroiliac joints — the place where the base of the spine meets the pelvis — but can also involve other joints, like fingers and toes, and even the jaw. It’s a systemic condition, and so people with A.S. often experience other disabling symptoms like debilitating fatigue and cognitive dysfunction, also known as brain fog. Unlike rheumatoid arthritis, there is no diagnostic blood test, so many people with A.S. report delays in diagnosis of five to eight years from when they experienced their first symptoms.
“The heart knows the bitterness of its soul” (Proverbs 14:10), meaning an ill person knows the intensity of his pain and weakness, and doctors cannot say otherwise.
So often we are told it’s all in our heads and are not believed when our complaints of pain and other symptoms are just not heard. Can you believe a doctor asked if I had issues of anxiety and if I needed medication for my nerves! Haha!
Two helpful things I can share with you are: one, always advocate for yourself and never let anyone talk you out of your symptoms. You can help save your very life!! (I will share that story later!) Two: It’s not worth pushing your body for anything or anyone. You know your body it will tell you what you can do or not. I say let them look… they don’t know you!
Grab some rest and live to see another day!
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