With Grace and Grit - Life with Chronic Illness
It’s hard to feel productive when you’re too tired to do anything. So when your body demands a break, take the opportunity to boost your mental wellness.
Have you ever felt like your brain wanted to do something but your body wouldn’t cooperate? I have. So. Many. Times. Like many other types of chronic illness, my autoimmune disease is unpredictable. It seems like it’s unpredictability is the only predictable thing about it.
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The one thing that everyone who’s suffering from a chronic illness wants is to get better. But don’t compare your progress to others – you are unique and your road to healing is unique, too.
We know that our disease can’t be cured, but we hope for and can reasonably expect to manage our disease to some degree – enough to see and feel some level of progress. And the possibility for some level of healing means that there is reason to hope.
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The grief of chronic illness extends beyond grief over the loss of our health. We mourn the loss of our place in the world.
We typically think of grief in the context of significant loss, like the death of a loved one. Irreversible. Permanent. Deeply painful. But grief isn’t reserved for that. We can and do grieve other kinds of losses. When we’re chronically ill, we grieve the loss of our health – but we grieve the loss of so much more than that, too.
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Joining a support group can help you feel understood and give you a sense of belonging. It’s another strategy for living well when you are chronically ill.
How did you feel when you received your diagnosis? Alone? Confused? Afraid? I know I did. There is almost nothing more emotionally isolating than facing a disease that you have very little (if any) control over. This is true whether it’s a chronic illness that can be managed, or an acute illness that is severe and threatens your life.
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If you’ve been diagnosed with an autoimmune disease – or are waiting for a diagnosis – there are seven questions you should ask your rheumatologist.
It’s been a year and half since I was diagnosed with dermatomyositis, a rare autoimmune condition that causes fatigue, inflammation, severe muscle weakness and skin rashes. By the time I was diagnosed I had spent two weeks in the hospital – including a couple of days in intensive care.
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The Spoon Theory describes how people with chronic illness need to ration the limited energy they have. But there are four things you may not know about being a “spoonie”.
Are you chronically ill? If so, you may have heard of the Spoon Theory. It’s a metaphor that uses spoons to describe the practical challenges of living with a chronic condition or disability that has you running on a gas tank somewhere between empty and half full (on a good day).
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Ready to try the Autoimmune Protocol? Asking yourself these three questions will help you determine if starting the AIP diet is right for you.
Autoimmune diseases can’t be cured – but can be managed. And we know that we need to take an active role in managing our chronic condition. When I was diagnosed with a rare autoimmune disease, I knew I had a long road ahead of me. And I was desperate to start feeling better. Could changing my diet help?
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Is a six foot distance enough? Does wearing a mask make a difference? Do I need to sanitize my groceries? Who knows! What I do know is that there are ways of managing COVID-19 anxiety.
I admit it. I’ve spent hours nervously curled up on my sofa worrying about a virus I may (or may not) ever get. And I only have so much control over that – unless I live alone, leave only when necessary and take every precaution short of donning a hazmat suit. Note to self: the hand sanitizer must have a minimum alcohol content of 60%, of course.
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We never think of long-term disease as a gift. But gratitude is the gift of chronic illness.
I intended to write about the anxiety of being among the “highly vulnerable” during a pandemic. But the truth is that I spent most of the morning writing a COVID-19 article for work – addressing how employers can plan for the challenges of a gradual return business as usual. Frankly, I’m drained. I’ve spent way too much emotional currency today thinking and worrying about this damn virus.
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There are two simple strategies for self-care that you can use to reduce anxiety and improve your well-being.
Take care of yourself. How many times have you heard this expression? If you’re chronically ill, I’ll wager that you’ve heard it a lot. But what does it really mean? How do you define self-care?
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Invisible illnesses can include autoimmune, psychiatric, psychological illnesses and other chronic conditions. Here are the honest truths about invisible illness – and some of the lies that we tell ourselves.
Lupus. Fibromyalgia. Inflammatory bowel disease. Rheumatoid arthritis. Chronic fatigue syndrome. Myositis. Lyme disease. Depression. Bipolar disorder. Post-traumatic stress disorder. HIV. Pulmonary fibrosis. Chronic obstructive pulmonary disease. Congestive heart failure. Chronic pain.
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With more than 100 types of autoimmune disorders, the road to diagnosing autoimmune disease looks more like an obstacle course composed of construction barricades, and dead end signs.
Any guess as to how long it takes to diagnose an autoimmune disease? According to the AARDA it takes about 4.5 years.
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