With Grace and Grit - Life with Chronic Illness
We want to be accepted for who we are. But many of us are reluctant to talk about our chronic illness. Why do we avoid it?
We’ve all seen the t-shirts.
Sometimes they boast a vividly colored ribbon representing a certain type of cancer.
Or they outright announce the name of a specific disease followed by the words “awareness month”.
And occasionally, they’re less specific but just as bold: “Proud Owner of a Broken Immune System!”
Do you want to know how many of these I own?
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Inadequate. Weak. Unworthy. Useless. These are just a few of the adjectives that describe emotions we may feel when we are chronically ill or experiencing chronic pain.
It’s not difficult to understand why our chronic illness makes us feel useless, or at minimum “less than”. After all, we’ve fallen headlong into the fiendish snare of defining ourselves – at least in part – by what we do. It doesn’t matter if those things are related to what we “do” for a living or what we do for pleasure.
But it doesn’t have to be this way! Read on for a fail-safe approach to living forward despite your illness.
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It’s a role reversal. You’re chronically ill but you need to take care of someone else. It isn’t easy, but it can done. And the best part is that there is something transformative about providing care to others – especially when you are accustomed to having someone take care of you.
In spite of its many variations, the common denominator of all chronic illnesses is their persistent nature – their “chronic-ness“. So we learn to accept living in a state of flux. Sometimes we do it with grace. Other times, our approach is decidedly inelegant. After all, we are trying to find our way through a maze whose pathways lead to barriers we can’t anticipate.
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Our lives are fraught with missteps and mistakes. Here are a few of the big mistakes that chronically ill people make.
I’m stuck. You probably know the feeling – the ongoing sense of being completely trapped at worst, or at best, feeling suspended in a state of inertia. I’m not moving backward but I’m sure as hell not moving forward.
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Living with chronic illness isn’t easy. It’s even harder when we fake being well – because there’s a price to pay for doing it.
Do you ever feel like the you’re the great pretender? It’s easier than you’d think – especially if you have a chronic illness that also happens to be invisible.
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I never anticipated that I’d find the hidden upsides of chronic illness. If you dig a little deeper you’ll find them, too.
Have you ever been asked if you’re a “glass half empty” or “glass half full” type of person? I’ve never thought of myself strictly in terms of being optimistic or pessimistic. I choose to think of myself as realistic.
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Parenting with chronic illness presents unique emotional and physical challenges. But there are things we can do to help our children – and ourselves – thrive in spite of our illness.
I’m not the mom I’d hoped I’d be. I have – more than once – allowed myself to re-examine the past. And I wonder how I might have parented differently if I hadn’t been ill.
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Family and friends mean well. But sometimes their efforts to make us feel better actually make us feel worse. Here are the top three things not to say to a chronically ill person.
I struggled with the title of this post. I could have gone so many different directions! From the decidedly diplomatic “What Not to Say to Someone who is Chronically Ill” to the definitively assertive “How to Completely Alienate Your Chronically Ill Friend or Family Member in Three Easy Steps.”
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Your job does not define who you are. Here’s what you need to know about chronic illness and employment so that you can make the best choice to honor your health and your heart.
Right or wrong, we’re strongly connected to the work that we do. We allow it to define us, and that’s a mistake. I’ll set the stage: you’re at a party or some type of get-together and you’ve just been introduced to someone.
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There are three things that I wish doctors knew – because these are the things that make the good doctors great.
I have a love/hate relationship with the medical profession. I’ll bet I’m not alone. I envy people who see their doctor once a year for an annual check-up, and maybe make the occasional visit for a sinus infection or a rash. I’m not that person. If you’re chronically ill, you’re probably not that person either.
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Illness often forces us to change how we live – to find a “new normal”. But there are ways to define your new normal so that you can live well and thrive.
Has anyone told you that you’ll find your “new normal”? I remember thinking about my own “new normal” way back in 2006. I had completed a hell of a long course of treatment for non-Hodgkin’s lymphoma and was in what I like to call the “now what?” phase. The treatment was over. Now what?
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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.
Grief. We typically think of it 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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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, I’m guessing you’ve 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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You can’t clearly see them, but invisible illnesses span a broad spectrum of diseases including autoimmune, psychiatric and psychological illnesses and other chronic conditions.
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.
What do these have in common? They can all be invisible illnesses. This is not a complete list – or even a list of the most common. But all of these invisible illnesses share these five honest truths:
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