Thanks, I’ll try that.

A story.

After working a couple of months full-time at the Art Gallery, I started calling in sick more and more frequently. I dreaded making the call. I dreaded hearing my bosses voice after I would have to, yet again, say I’d be late or not in at all. I was really lucky to have the boss I did because for all the times I was late and absent, he remained pretty understanding and encouraging. But he was only one guy. I worked in a gallery with 40 other people.

There are some inevitable things you’ll confront with this illness. And from the emails I’ve been reading recently, it isn’t just this illness. It’s all kinds of autoimmune diseases and beyond. The first inevitable thing you’ll confront: people who don’t believe you. I always wondered why that was. Why would I make up the stupidest sounding disease I have ever heard of? Chronic Fatigue Syndrome? Why don’t they just call it Tired-Lazy-Person-Disease. Anyway, I know people call-in sick when in actuality, they aren’t. That’s occurred since the 40 hour work week began, I imagine. The last 6 months of my job were more me faking healthy than sick. I was sick everyday. It was just a matter of, was I not too sick to be able to get through the 8 hours. Having a boss who believed me was a blessing. Unfortunately, the rest of the office…wasn’t  so sure. If I really think about it, I can’t totally blame them for their skepticism. Some young newby walks in the office with optimism in her eyes and excitement about having her own office supplies..then slowly…surely…shows up less…and less…and less. I knew the things they’d say when I called in. I heard what they would call me when I wasn’t there. I walked into enough rooms with that sense hanging in the air…that tangible feeling that you were the topic of discussion, and it wasn’t about how great you are! Some of them just looked at me with plain anger, which was hard for me to swallow. But I knew what they thought at the root of it: that it wasn’t fair. I got to miss all this work while they got their asses to the gallery everyday and on time. Everyone is tired, that’s no excuse. If they only knew how unfair it really was. I would’ve gladly traded with any of them. I always said that, but no one believed me.

The next thing you’re going to confront: advice. Sweet, unsolicited, unknowledgeable advice. And here’s how it will go. Have you tried acupuncture? Have you tried rolfing? You need to try acupressure. You need to re-set your bodies internal clock. You should do yoga, at least 3 times a week. You should work out, hard, every day. You need to drink more water! Have you ever considered going gluten-free? Dude, it’s probably the mold. You should avoid dairy, that’s what my mom did and now she’s all better! You’re eating too much salt. You just need to push through it. Massage therapy! Chiropractor! Holistic medicine! You should stop taking every pill you’re taking, cold turkey. I’d bet you’d feel better. Go running! Go to a psychiatrist! Go to India! I heard this thing about acai berries… Have you tried talking to God about it? You may dabble in Buddhism..that did a lot for me. I’m sure it’s nothing a little exercise couldn’t cure! If you just spent 2 weeks with me, I’d have you fixed in no time. Stop drinking coffee! Stop eating meat! Stop eating and drinking! Don’t sleep so much! Have you ever gotten your cavities filled? Ah, it’s your fillings then, they’re leaking toxic chemicals into your blood. You should try taking magnesium, you’ll feel better! I have something called Tylenol, will that help? 

And those are just a few..I could go on. Also, those are all real pieces of actual advice I’ve been given. And I’ve become pretty well-versed at receiving advice that I don’t want. And the response is this: Thanks, I’ll try that! The reason I say that is because, for me, I was tired of spending hours explaining to people that I had already tried pretty much everything, seen 10 doctors, and tried diet changes. People couldn’t understand that exercise made me worse and rest was actually good for me. By the end, you’re just tired. Tired of talking about it, tired of fighting people on it, tired of defending yourself, of convincing people you’re not crazy, you’re not lazy, and you’re not a basket case. By the end I didn’t care. Truthfully people just want to help you, and so they offer advice. And that’s fine. But, would you tell someone with aids to just drink more water? Or someone with cancer to just take more vitamins? Doubtful. Not unheard of, but doubtful. And that is why, it’s just so much easier and less exhausting to say: Thanks, I’ll try that. Smile and nod. Thank them for the advice, and keep moving. They’ll get it or they won’t. But whether they do or not is not what will get you better in the end. It sucks not to be believed. It sucks to be misunderstood. But when your energy level is already such a commodity, it becomes a matter of livelihood. I didn’t have it in me to fight the world anymore, so I let them say what they say and do what they do.

There’s a quote I’ve liked since I was a kid that I would play in my head when the “noise” of the world became too loud. It’s something like this:

No one knows what I am. Only I know what I am. If I were a giraffe, and someone called me a monkey, I’d think, No, actually, I’m a giraffe. “

So it’s not the deepest of quotes, but I enjoy the simplicity of it. And that’s how I started to have to see myself. I needed to stop proving what I was and what I wasn’t, and just be exactly what I was: a sarcastic sick kid trying to get through every day. And many times-failing! Everyone you meet has a story, has their own battle. And we’re all quick to think we know who everyone is, and put them in a box with a nice clean label on it. But inside we all know, it goes much further than that.

I’m sharing this story because I’ve received quite a few emails and responses about the loneliness in being sick, not being believed, and the difficulty in explaining their respective illnesses to people they care about. I am just one person and this is only one experience, but I think this is a big lesson. Allow yourself to be sick. Accept what is. Don’t run from it anymore. Don’t dwell on it either. Just acknowledge what is, and see where the clarity takes you. You’ll be surprised. My final thought is this. After a particularly hard day, a few days after I had lost my job and realized I would have to give up my apartment, I was angry. I was really sad but also really angry. I kept thinking about that word Fair, and how this Wasn’t! I don’t know where they came from, but when I laid down to sleep that night, these words came over me: You were trusted with this illness. And that, among all the health advice I’d ever received, made me feel better.

Health, Happiness, and Thanks! I’ll try that.

But chances are..I already have. :)

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68 thoughts on “Thanks, I’ll try that.

  1. I totally get this post. Years ago, I caught mono and my body felt sick and tired all the time for months afterwards, and I also went to work throughout some of it.
    People were so unsympathetic and sometimes even rude. They were like, “You need to get over it.” or “It’s all in your mind.”
    Actually, no it was all in my body..like I had a magical switch I could flip to make myself better…it took me over 6 months to get over, and since then I am completely sympathetic to people who have any kind of chronic tiredness health issues, because I experienced them myself and the body healed when it was ready too despite all my own efforts.
    I sincerely hope you feel better, I am understand your plight in my own small way. I also enjoy reading your blog immensely, it has been the amused me for the better part of my morning. :)

    Like

  2. I have a slew of diagnoses and have also had to endure countless well-meaning people telling me to try this and/or that, and initially, I did try things. Like you, I got to the point where I would nod my head and smile because engaging in further discussion was just not worth the energy it would require.

    This post touched on the biggest thing that helped me to get where I am now (I hesitate to write “better” or “recovered”), that being acceptance.

    We may not have control over many things in our lives, but we can choose how we respond to challenges we face, and I choose to accept things and move on as best I can.

    I look forward to your future posts.

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  3. Oh hai, could you please switch places with me for tomorrow and explain this concept to my dad and his side if the family?

    I seem to have come over here for Christmas thinking we would have a nice time, but since I have injured my back (need surgery, its an acute thing, easily seen on an MRI) and they found a massive ovarian tumor (also difficult to fake), they have decided I am a lying drug addict who “did this” to get time off work. Even though none of my drugs are controlled. But since I’ve “cried wolf” all these years, what with psychological problems (bipolar), a proven sleep disorder, bones that easily break, neurological problems, whatever…obviously I’m “faking” a tumor to have surgery so that people pay attention to me…

    So, reading your post has made me feel 1000x better considering the past few days I’ve had!

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  4. Thank you!!! I am a 23 year old with Behcet’s and I HATE unsolicited advice of any kind but especially about my health. The diet advice is the worst!

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  5. Hi Mary
    I know exactly how you feel. I have vitiligo and people offer me unsolicited advice all the time. It’s not that I haven’t tried to alleviate it…but it cannot be treated now. Anyway, what I wanted to say is that I think it’s a bigger deal for people to see me with vitiligo, than for me to handle it. I sometimes have days when I feel so confident, and then a comment or look that gets me down in the dumps. So, hang in there. That’s what I tell myself too.

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  6. Mary,
    I just wanted to let you know that I’ve been showing your blog to my teenage clients (I’m a Psychologist) in hopes of letting them know that many people suffer with invisible challenges. Many of them are getting teased for being homosexual, anxious, cutters, and being in therapy to try and get help for their depression. This blog made one girl with depression, and also in the process of coming out to friends and family, say, “she’s right. I dont have the energy to deal with [those kids’] words, I need to be a lake.”
    Thank you very much! It was a good day –

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  7. Here’s one I heard a while back: “You know they have pills for that now, right?”
    Problem solved! There’s pills! Will wonders never cease.

    Thank you for writing about this stuff. Also- art gallery? Cool points for you.

    Like

  8. This is exactly how I feel. I’m 20 and have fibromyalgia, chronic fatigue, chronic regional pain syndrome, and some undiagnosed neurological thing my doctors just call ‘progressive cyclic neuralgia’. Unfortunately, none of those things are outwardly visible so people love to judge and give unwanted advice. I’m really glad to know that I’m not the only one who feels frustrated about all of this. I don’t have any other friends who are sick, so even though I have a lot of friends, reading your blog makes me feel a little less alone :)

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  9. thank you so much for this. I have rheumatoid arthritis and lupus, I am almost 25. This is the story of my life put to words. you have no idea how great it feels to know you are not alone.

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  10. I check your blog everyday for new posts! :) youre very funny…and smart… and just interesting!
    :)

    looking forward to your next post!

    Like

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