Life, by the Spoonful

The incessant need to “manage” my diabetes chips away at my energy, no doubt. Sure, there are good days when I can’t imagine letting it stand in my way. But there are plenty of bad days, too, when I may look and feel “OK,” even while I’m partially falling apart on some level. Spoons

So how do I explain this apparent paradox to other people? How do all of YOU deal with the fact that “you don’t look sick” but are still struggling every day with a chronic disease that can definitely sap you dry sometimes?

My January Straight Up column over a dLife takes this one on. Christine Miserandino of ButYouDontLookSick.com — who lives with the autoimmune disease Lupus — has developed a great theory to explain this with just the simplest of visuals. It’s all about tackling life one spoon at a time. Take a read.

Aside from explaining myself to others, I found her theory just as useful for quieting my own demons: it’s important to acknowledge your own limitations, so you don’t push yourself to the point of spinning out of control, which is unfortunately very easy to do when it comes to manually “managing” your blood sugar levels every minute of your life.

I think everyone living with some type of chronic illness can relate to the good day/bad day scenario, so thank you for the perspective, Christine.

Christine_spoon_color
[Editor's Note: Christine even has a very active Facebook group with over 2,700 members, calling themselves "Spoonies," and was interviewed recently on CNN.com's Paging Dr. Gupta blog about "how to handle a friend's diagnosis." You go, Girl!]

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7 Responses

  1. Rosalind Joffe
    Rosalind Joffe January 4, 2008 at 2:11 pm | | Reply

    I lived with MS for 30 years – and I’m still surprised by the disconnect between how I feel and I look.I don’t think you can explain it – Christine’s spoons are helpful but in the end, I think most people have a very hard time understanding anyone else’s experience. It’s lonely – but I think our best option is to “validate” it to ourselves. Rosalind

  2. Lisa Emrich
    Lisa Emrich January 4, 2008 at 5:36 pm | | Reply

    I read the ‘spoon theory’ several years ago on a MS forum. Initially, I appreciated the correlation in the story equated a finite supply of spoons to a limited sources of energy or resources. However, the more I see this story used by various groups, the less significant it becomes. The overuse seems to encourage folks to say, “oh yeah, I know exactly how that feels” or “I experience that all the time.” Statements such as these show that the person doesn’t get it and that they have absolutely no idea what it really is like. I suffer with debilitating MS fatigue and thankfully my mother, who has lupus, will simply say to me that “only you know how you feel.” I love her for that.

  3. Bernard Farrell
    Bernard Farrell January 4, 2008 at 9:30 pm | | Reply

    Amy

    Thank you, thank you for the pointer to the Spoon Theory article. As I burn the midnight oil (and tear through spoons for tomorrow) I’m truly grateful for Christine’s most valuable article and analogy.

    Despite having type 1 for 35 years I’m still learning. And some days, like today, it’s a big lesson. Thanks again Amy.

  4. Lauren
    Lauren January 4, 2008 at 11:41 pm | | Reply

    This entry echoes my thoughts today … as the Bay Area was pelted with torrential rains and hurricane-force winds, I felt that the weather mirrored my feelings of frustration. I had a nasty low at 3 a.m., treated it, and woke up with a high BG and a headache that didn’t go away after my coffee. Throughout the morning, I tested every hour. 153, then 115. Good. Then, I started to feel the first signs of a low … 69. Here we go again. ARGH.

    Throughout the course of my normal workday, diabetes is always there, pinging like a sonar in the back of my mind. It’s a load I’d rather not shoulder, and something I cannot ignore. It chips away at my patience and makes life’s other little annoyances seem worse. Sometimes I wish my body would outwardly reflect the number of hours I spend achieving good control — I know my insides are benefiting, but it would be nice to have muscles or some other outward sign of all the WORK I am doing here!

  5. Mark
    Mark January 4, 2008 at 11:53 pm | | Reply

    Up until very recently as a Type 1, I too was a spoonie. Then all of a sudden I lost over 20 pounds and I was more irritable then usual. No longer was I a spoonie. To make a long story short, I have now joined the ranks of those requiring a gluten-free diet. Pretty soon I will be back to being a spoonie.

  6. Sarah
    Sarah January 5, 2008 at 1:56 am | | Reply

    Thanks Amy, I LOVE the spoon “model” (if people will actually “get it”).

    I can relate to each and everyone of the above comments. I am 25 and feel 90. I tell my husband to be patient with his “90 year old wife”. ;) I was sooo tired, we missed out on part of our honeymoon. It just shouldn’t be that way.

    Autoimmune diseases are a hidden disability.

    Since I look fairly young. healthy and “attractive”, I have had doctors ask me why I’m “at the doctor’s instead of on a date”. Once I rattle off my diseases, their jaws drop.

    When I came in to have a TSH followup, one doctor (a fill-in) told me that my levels was probably “fine”, even though my thyroid levels swing wildly and suddenly, as they have for the past 15 years. He was all set to give me a prescription for XANAX, thinking I was a “typical hypochondriac woman”. When I told him I had Type 1 diabetes, he almost spit out his coffee. He then changed his mind, seemed to panic, and ordered a kidney screening to see if that may have been causing my symptoms.

    In the end, as usual, the only thing wrong was my severely abnormal TSH. But the experience still ticks me right off.

    I suffered slowly with undiagnosed Celiac for about 1.5 years. I was tired all of the time (sleeping 14 hrs per day), depressed, and having severe lows. My doctor said “You’re blonde, what’s the problem” meaning I *look* healthy.

    Well, after developing “late stage” classical Celiac, and losing 15 LBS off my tiny frame in 3 weeks, losing my hair, having severe joint pain, lows, abnormal heart rhythms, dizziness,dark circles under my eyes, and other scary symptoms, I finally was able to get tested for Celiac after begging for the test.

    My levels were off the charts, and I was diagnosed even without the biopsy based on those and my symptoms. I had the biopsy anyway. Virtually no intestines left. But I *looked* great, right?

    It is really hard to explain to someone why you need a “sick” day when you look and sound “fine”.

    Although I agree that it is hard for ANY autoimmune disease sufferer, I think it is especially bad for Type 1 diabetics. We get so many idiots proclaiming about how “diabetes” (Type 2) is a “manageable” and “controllable” disease if only you put in the effort. Yeah right. I can do everything “right”, and yet I still can’t be a pancreas, go figure.

    I have been lucky, most people I know realize how serious MS or Lupus is, and how they can affect people’s energy.My aunt has MS. But they don’t seem to see that with diabetes.

  7. Wellness
    Wellness May 13, 2009 at 9:02 am | | Reply

    I drink milk everyday to keep healthy.

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