It’s More Important To Feel Marvelous Than To Look Marvelous: Invisible Illness


TWO YEARS AGO, post-Kauai

TWO YEARS AGO, post-Kauai (Who doesn’t “look great” after 2 weeks in Hawaii, I ask you?)

I hesitate to “post” about medical issues. I don’t want people (by which I mean my employer and much younger coworkers) to view me as different: older, weaker, less-than I was. Limited.

But limited is where I currently reside. I don’t know how long I’ll feel this way. Maybe another week? A month? Probably not forever, but for now, it seems as though my present limitedness knows no limit.

“You look great!” people say, and they’re being nice. And they sound surprised. Karma’s cute. About three months ago in a Fluevog store in Minneapolis, I said something along these lines to the woman helping me after she told me she has cancer. I was stunned. She had so much energy, her countenance was downright sunny. Actually, I said something even more insulting than “You look great!” I said, “But: you look so ALIVE!” And she’s like, “Uh. I’m not dead.” My foot has never lodged itself so firmly in my mouth.

So I look great, but I don’t feel great. I’m guessing the lovely Minnesotan woman I offended did not feel all that great. There’s pressure that comes with looking great, healthy, “fine.” I explained it to a friend recently thusly: It’s like when you see a two-year-old with tall parents, and that two-year-old looks like a four-year-old, and you expect her to be able to speak, potty independently, have self-control and manners. But she’s just two. It’s too much to ask of her. That’s how I feel.

It turns out I’m not alone in feeling this way. Did you know there’s an Invisible Illness Awareness Week? A friend who suffers from an invisible awareness made me aware of But You Don’t Look Sick.

When I change my profile picture on Facebook, I go out of my way to caption the photo, clarifying so there’s no doubt that my robust image pre-dates my cardiac event. Yeah, I DID look great and healthy in that photo. Thanks. Read the fine print, please. It was taken two years ago. Don’t expect me to act like I feel that good.

Feeling this way threw me into a quandary this past Sunday. At 9 a.m., before my husband showered he asked me whether to wake the teenagers, and I rolled over and wrestled with expectations of myself. I thought of my neighbor, one of the pastors at our church, who has Parkinson’s Disease. I thought of him and the effort it must take for him to show up at church, his job, to shake hands, give hugs, be cheerful and loving. As I lay there shoulding on myself, I opened the WordPress reader on my phone and was greeted by this post: When We Don’t Look As Sick As We Feel. I read it and thanked Jesus for the permission to stay home. I said a prayer for my pastor, decided to let go of my guilt for a moment, and “listened to my body.” My body slept in till 1 in the afternoon, and the day before that I had collapsed into a four-hour nap. It was a lost day.

But yesterday was a good day. It was a fairly high-energy day, relatively. I did what I could and even reached. It was more than I’ve accomplished since before my July 23 heart attack. Recovery Journal Entry:

Monday, August 18: woke at 10, got up, dressed, did one light load of laundry, took brisk 15-minute walk, 25 crunches, so far so good at 2pm. baked a cobbler, did some computer work, dinner was delivered which helped immensely, took another walk with Jack, went to bed at 11:00.

Part of what made yesterday a good day was the relief and security I felt knowing a kind friend was going to bring a meal at 6pm. (It was delicious and nutritious, Jenni. Bless you.) Knowing that if I pooped out, which is a common, capricious occurrence, my family wouldn’t have to scrounge in the fridge for something nutritious to eat, that my husband wouldn’t have to run out for take-out. Huzzah for good days.

Today? Not so much. But thank God for a solid employer with generous short term disability benefits. For two more weeks I can allow myself to go with however I feel on a day-by-day, hour-to-hour basis. If I’m wiped out, I rest in knowing I don’t have to push myself too far. I know I can drop and sleep if necessary. I will still get out of bed, wash my face and fix my hair, and get dressed. I will still take at least one short walk, because I’ve been told physical activity is good for my recovery. I will walk on routes outside my neighborhood in order to avoid running into a friend who may tell me how great I look.

And one of these days, there will be two good days in a row. And then three. But for now I will enjoy the ones, when they come. Without limit.

What a girl looks like 12 hours before a heart attack

What a girl looks like 12 hours before a heart attack

IMG_0290

What a girl looks like 48 hours after a heart attack. Necrotic heart tissue is not visible on the face.

About these ads

24 thoughts on “It’s More Important To Feel Marvelous Than To Look Marvelous: Invisible Illness

  1. Beth, people would say that to me too. My cancer ailment was not obvious so when I ran into people that knew my condition, they were surprised that I looked like myself. I started felling bad that I didn’t look sickly. It was weird. I totally get it.

    Let me know if you change your mind on another meal. I could bring it next week!!

    xo

    • Which is why I decided to get over my inhibition about publicizing health related content. It’s personal, yeah, but I figured others might relate. Thank you for your friendship. xo

  2. Darlingest, dearest. I’ll admit I’ve had difficulty processing what has happened to you amid some sincerely rough nonsense of my own. I reached a point a few weeks ago, sadly near the time your posts started illiciting my What the Fuck response, where I realized I lost my ability to process any more badness. For this, I sincerely apologize, and I want to say that even though I didn’t reach out right away, you’ve been on my mind and in my heart. I wish you speedy recovery + I send you happy thoughts, warmth, and love. Were it remotely reasonable, I would bring a casserole. It sucks having friends for whom you desperately want to make casseroles who live too far away for it. :-( <3 :-*

  3. Thanks so much Beth for including a mention and link to my Heart Sisters post, “When We Don’t Look As Sick As We Feel”. I have been blown away by the astute reader comments in response to this post – it must have struck a chord!

    I really enjoyed your essay, and I groaned right out loud when I read: “But you look so ALIVE!” Not only hilarious, but highly educational!

    regards,
    C.

  4. Thank you for writing this. Such a conundrum, isn’t it? We want our friends to be well, it scares us when they aren’t, and we seek comfort. We want to believe that if they don’t look sick, they can’t be all that sick. But so much lies beneath the surface. And there must be so much pressure for the sick person (you) to feel as though you have to comfort others. When others say You Look Good, they’re subconsciously asking you to validate their denial of your illness. All innocent, but there nonetheless. I do this myself all the time. Thanks for making me more aware. XO .

    • Oy (may I say oy?), I certainly did not mean to sound so whiney. I think I must have sounded whiney. All I mean to say is: I’m a slug inside my shell, and here’s why. And gosh, how I have missed all the silently suffering people we must encounter every day. Mental illness being one culprit. I just wish I felt as good as I look. Evidently I look fantastic. ;)

  5. Thank you for reminding me of the day we met!
    I honestly don’t always ‘feel’ great- but I ALWAYS feel great to be alive- and you did not offend me in the least- no foot in mouth in the least! I have cancer- it does not have me!
    Everyone on the planet diagnosed or not has something that they struggle with- mine just has a name- if we could all remember that about others and use it as the glasses we view the world through we would all be more understanding and compassionate. I am grateful I was able to see your post!
    : ) Hang in there- LIFE is good! Our worst day is someone else’s best day!
    HUGS
    SHERI

  6. Beth, thanks for sharing. I didn’t know any of this – and know I know so much more than just an event in your life. You’ve shared your life. Thank you. Cheering for you and more interested than ever in finding a way to collaborate. – Evan

  7. Beth, I had NO IDEA you had a heart attack and I feel like the least observant person in the world. I’m so sorry this happened, but I am still so grateful you’re pulling through. No matter how hard it is or how long it takes. I’m just happy you’re here.

    • It is perfectly okay for you to miss out on the details of others’ lives, Ashley! You have a lot going on in your world. But know how much your kind words mean to me: my heart is touched. xo

  8. Hi Beth:not sure how I missed that you’d had another ( am I correct?) heart attack. I’m sorry to hear about this! That stinks, but I love that you are writing about it, how very cathartic and how courageous you are to share your story, I can very much relate to the u look great story, having had breast ca, double mastectomy, but no chemo most people didn’t know! You hang in there, take good care of you !!! Pace yourself and heal in your own unique way… Many Blessings to you for a speedy recovery! Pls let me know if u ever want to walk?

    • That’s okay! We all have stuff going on; I know you can relate, and I find inspiration in seeing where you are now in your life, post-cancer ordeal. I’ll PM ya about walking.

  9. I think we humans get caught flat-footed. You’ve just learned something devastating about what another human being is facing. What do you do? You try to say something that you hope communicates caring and empathy for that person. But somehow it comes out “wrong.” Why? Most of us haven’t been trained or have much experience on how to react. I’m probably the worst. I saw a cute video on YouTube once that explained this much better than I could ever say. So don’t be so hard on yourself with your own foot and mouth and try to remember that when other people react to you they are having the exact same problem. :)

    I found the video: The Power of Empathy

    • Oh yes, I recognize that people are being caring – and are surprised, frankly, that I don’t look worse – so I should give myself that same benefit of the doubt. But still. And, how cool is it that the woman in Minnesota commented right on this very thread and gave me grace for my blunder. She’s the coolest. Thanks for stopping by, Tombee.

  10. Pingback: But Looking Marvelous Would Be Nice Too: Back to Normal | Lit Grit

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s