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. :)

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  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.

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  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!

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  11. Ugh – it’s hard taking advice you already know, or have already tried. I don’t live with the exact same issues but I had intense anxiety for a long time and people would just tell me to breathe a lot. Just breathe! Have you tried just breathing? My god. I’m lucky I didn’t end up insane too.

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  12. I may be one of the few people who read your blog who doesn’t suffer from a chronic disease. But I am a nurse, and I take care of people who do suffer (cancer, sickle cell, etc.). I’ve read in some of your earlier posts that you’re taking classes to become a nurse as well. For what it is worth, I think that you would be an excellent nurse. Because even after all the education and clinical time and whatnot, if you don’t have the heart to understand what someone is going through you have nothing. And you definitely have the heart. One of the first lessons we learn is that pain is what the patient says it is. And it’s a lesson that is easily forgotten. So thank you for giving me a healthy reminder. I wish you all the best as you go forward.
    -California RN-

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  13. great perspective – thanks so much for sharing!

    in no way does this compare to the physical illness that you’re going through, but I’m trying to work my way through depression and i feel like i can identify with a lot of the feelings you shared. especially the people offering advice part… i literally think i’ve heard all the same things you listed, is there a guide to ‘feeling better’ that i’m unaware of!?

    another one i get a lot is youtube videos – everyone sends me funny youtube videos to try and make me feel better… it doesn’t help (at all) but i go ahead and watch them and say “lol that was great” – if you want the playlist i complied i’ll gladly share… haha :)

    thanks again for your post! definitely a blessing in my day

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    1. I have fibro, anxiety and chronic depression. All misunderstood and difficult. Which came first or was caused by the other? That is the classic chicken and egg question. Your depression is just as real (and can cause physical symptoms).

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  14. i am fortunate in that my TheEngineer believes me. he still tells me “feel better soon” but he tries.

    i’m HIGHLY amused that the ex had the incredible luck to get involved with a lovely woman who was suddenly struck with an intense fibro flare after surgery and so he got to see her go SUDDENLY downhill, where my slide was more gradual. all the problems i had clicked in his brain. he has a lot more compassion now.

    enough sleep DOES help me. but my idea of “enough” doesnt always line up with what others think is “enough”.

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  15. You just described the last six months I spent at my job exactly. And isn’t it the biggest relief ever when you finally accept that you are way sicker than you’ve been willing to admit and move on to your next step? Faking health can take so much energy. Anyway, the one piece of advice I do have is completely non-medical, because lord knows I don’t have the answers either. But, the next time you are able to hold a full time job (which will totally happen as cyclical as CFS is), find one that has long term disability insurance and pay for the best policy they offer. I did this at my last job, and because I had a good policy, I have been able to remain financially independent even though I haven’t been able to work in over a year and am still fighting for SSDI. Wishing you good health and energy through the holidays!

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  16. Your blog really makes me feel normal, i know its an odd way to put it, but after being sick for so long and having to deal with the countless amount of people who just do not understand you are sick, it’s refreshing to know that someone else feels the way i do sometimes. Please keep writing your blog, you are so talented and i enjoy every minute i spend reading it! Thank you!

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  17. Mary! How glad I am that I’ve found your blog. Thank you for sharing your story – it helps people like me feel less “alone”. I’ve had CFS/Fibro for almost 13 years now. Reading this actually made me laugh because I know the story far too well.

    I have lost a lot of friends over the years. But I have also found some of the most supportive people too. They are the ones who don’t question what you’re going through; they’re just there, being supportive when you need them. I see this as a “blessing” of the illness – it forced me to find out who my real friends are!

    Your story is SO identical to mine it’s not even funny (just add 4 years to your age and BOOM. That’s me.)

    Thanks for the “faking healthy” line. I’m sure I will use that at some point in the future :)

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    1. PS: A psychologist once told me that people offer unhelpful advice (“You just need more sleep”) because it helps them to affirm that they are doing the right thing with THEIR life. Eg: They believe while ever they have adequate sleep, they won’t be struck with CFS. Whereas, people like you and me, who know it doesn’t really help, unintentionally challenge them because we are saying (spoken or not) “Sleep isn’t the cure – nor will it mean you can avoid getting CFS”. Their unsolicited advice tends to offer them more comfort than us – even if they think they’re being truly helpful.

      (I try to be grateful towards them anyway…)

      Just something I found interesting…

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  18. Thank you! If I had a nickel for every time someone gave me unsolicited advice or for every time the doctors just shrug their shoulders I would be rich. I do practice yoga daily and IMHO it does help. But I totally get it and I’m right there beside you.

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  19. Hi..new follower of yours, via a friend who showed me your page.. I too am a fibro-mite, a rheumatoid arthritis lady, a person who at the age of 7 started taking shots to grow because my body refused to do it.. I think the forcing it to grow caused my fibro, but we will never know. Anyway..I love your page.. you say what I have not the nerve *(and I am a gutsy woman) or the tact to put together.. thank you! I agree with EVERYTHING so far you’ve put down..
    Take care of yourself.. holidays can really put a strain on your body..
    Joanie

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  20. Wow, you’re tough! I caught a wee glimpse of having a chronic disease when I suffered from mono for three years. After three years I didn’t know what to do, I was so down and beaten, as much from the illness itself as from the continuous fight of having to ‘prove’ to everyone that I was actually ill. All honours to you for living with your illness, and thank you for such great posts as this which reminds the rest of us how lucky we are!

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  21. I appreciated your advice about accepting your illness. I’ve recently been diagnosed with ADHD and I’m trying to do just that. Not very people know about it yet because the people I have told don’t understand or don’t believe me. Thanks for sharing your own experience with Fibromyalgia.

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    1. Hello,

      I had to comment about your ADHD diagnosis, being someone that treats it and lives with someone who has it. ADHD is a developmental and neurological disorder. Much of the impact is found in the prefrontal cortex, but other areas are affected as well. It is thought that the neurons are not communicating as quickly as they otherwise might (I like to say that the message gets distracted by something shiny (: )

      Anyway, here is a link for women and ADHD
      http://www.help4adhd.org/en/living/womengirls/WWK19

      Also, the book “Is it You, Me, or Adult ADHD?” is great for discussing this disorder and common misconceptions you will run into! This disorder is grossly under-diagnosed in women and adults in general! Happy focusing!

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  22. My husband told me last night that certain people get fibro, and I am not fighting it or trying hard enough. Also that it’s not real….so that’s nice.

    I hold down a full time job in the military and am on my feet a lot. I try to work out when I can. I have two children under the age of ten. I think I’m doing pretty okay, personally.

    Misunderstanding sucks. I’m glad your mom is so supportive of you. Everyone deserves support.

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    1. I’m so sorry that your hubs isn’t being nearly as supportive as he should be. I cannot imagine the additional drain that must add on you, wow.

      I recently had a family member (extended familiy member too, not someone nearly as close as a spouse) tell me that my situation was “all in my head.” i flipped. i literally flipped, i was SO HURT. (and, i’ve been through the wringer with psych, neuro-psych, all kinds of folks to assure me it’s damn well NOT in my head)…

      it was just so undercutting, and my feelings were wrecked.

      my husband is a Marine, and we don’t have any kids. i see how hard and constantly he works. i couldn’t at all imagine doing his job + having children + being sick. i admire you so much.

      thank you for your service, and continue keeping your chin up and doing what you know is best for you!!

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      1. Thanks for your message. I guess we are all dealing with skepticism on some level or another. So frustrating.

        My hands are not really working today, and it’s the first time that’s happened so it is really scaring me. Shaking and writing with a pen takes so much effort. I don’t know if it’s fibro or something else.

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      2. hi adrienne… i can’t reply to your reply (probably because we’re not supposed to have our own conversations in the comments section of someone else’s blog… oopsies!) from what i gather, mary doesn’t really seem to read/reply to comments though, so hopefully she won’t be offended.

        i totally understand about the hands. i have good hand days, and bad hand days. the disease i have, variegate porphyria, can cause numbness, tingling, and even nerve cell death in extremities (well, anywhere really, but extremities seem to go frist). i have an intentional tremor that comes and goes, and on top of that – the meds make me retain water so terribly, when i wake up in the morning my hands and feet can sometimes be so swollen it’s painful!

        i’m an artist and a writer, so it’s a bummer.

        but just don’t freak out right away… just see what happens over the course of a few days, and keep your doctor in the loop! who knows what the culprit could be.

        hey,. if you’d like to chat more – cruise over to my blog or email me: happyhippierose@gmail.com

        i’ve been dealing with chronic illness for ten years, and i’m a nurse… so i think i’m usually pretty easy to talk to. let me know =)

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  23. Your writing is so very poignant. You are the only other person I have heard refer to “faking healthy”, which is a practice I began in high school. When people offer me unsolicited advice I tell them “I’ll look into it.” of “I’ll read up on that when I get the chance.”

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  24. I have fibro, another pain condition, restless legs syndrome and insomnia. I would just like to say, “Amen!” I am sharing this on facebook and on my blog because everyone needs to read this.

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  25. While I am not diagnosed with your condition, I do know the feeling of people thinking your pain is made up. It’s very inspiring to read your story, and know to an extent what you’re going through. Just relating to the same feelings. Its admirable that you’re this strong. And thank you :)

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  26. this is so my life, literally.

    i’m going to show this post to some friends, in conjunction with some of my own blog postings to TRY and explain things.

    i’m so exhausted of the rigamarole of recommendations and the insistence that it’s mind over matter and i’m not trying hard enough. i don’t know anyone who *tries* harder than i do. i am always perky, happy, grateful, and optimistic. i’m a giver, i go to church and i pray daily and diligently. i give to charity. i volunteer. i love babies and animals. i do yoga. i’ve done acupuncture. i get trigger point injections and adjustments. i’ve been through and through psych consults and testing… neuro psych testing. i’ve messed with my diet, i’ve taken supplements. i meditate. I DO EVERY EFFING THING UNDER THE SUN. including get sun, and avoid the sun, vitamin D supplements…

    and holy shit, so on and so on.

    it’s infuriating to be looked down upon for just taking my medicine and living life at my own pace.

    i live with my health issues and i make the best out of every day i’m gifted. i love my life. i am happy, and well-adjusted, and i feel good about my choices.

    every time i hear the phrase “i don’t take medicine.” my blood pressure spikes. or lately i had some friends express how they don’t believe in drug studies. omg. i would be dead as a doornail without medication, modern western hospitals, my doctors, and drug studies.

    and like you, mary, i am not an idiot. i think (based on what i’ve gleaned through your blog) that you’re very smart and informed. i feel the same way. i mean, i’m an RN, BSN for pete’s sake. so when we make decisions on what’s best for our bodies, i’m not sure why people can’t just leave well enough alone!

    GAH!

    sorry to leave a huge ranty comment for you… but hot damn, you hit the nail on the head today!

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    1. happyhippy: your words, “i live with my health issues and i make the best out of every day i’m gifted. i love my life. i am happy, and well-adjusted, and i feel good about my choices.” are so perfect for the way I feel everyday! I’ve never really put it into words or tried to for that matter but I read this and I froze…that is EXACTLY and i do mean EXACTLY how I feel about my life and my health! And I have to say and I’m sure Mary would agree…your huge ranty comment was fabulous! Enjoy the “gifts” Hippy, for who knows how many more we each have to open!

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      1. thank you so much, and i’m so glad to read that’s how you live your life too! that’s so rad. we have to make the most of what we have, right?

        i wrote on my blog once about the day i was diagnosed with cancer (i fought and beat stage III lymphoma back in 2004): http://happyhippierose.wordpress.com/2011/08/17/the-health-history-of-happy-hippie-rose/

        – look for the story in italics- but after that incident, it’s totally changed how and why i try not to attend my own pity parties!!

        i think it’s so rad that i took the words right out of your mouth, great words to share =)

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  27. Thanks for your honesty! I have fibromyalgia too, and your method is way more tactful than mine. So maybe I’ll try that! :)

    The worst I have run into was people not even caring that something was wrong. Awkward conversations where they were afraid to say anything, lest they offend me or heaven forbid I actually tell them the honest answer to the innocent question, “how are you today?” At least the unsolicited advice I can pretend to interpret as caring. Hang in there, and better things will come your way!!

    ps those angry people who think it is unfair to have a chronic anything obviously couldn’t handle the magnitude of what you go through every single day.

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  28. I cannot tell you how many times I’ve heard ‘If I could train you for just 2 weeks, you’d be feeling so much better’ or ‘you just have to build up your stamina’. Good for you for writing about this – you’re a brave, tough, smart woman! I wish you only good things to come!

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  29. I’m still hanging on your words…”you were trusted with this illness”… You’ve said so many things that we’ve all thought, felt, screamed, cried…

    Thanks for sharing it for those who have not had someone in life to share it with, or have not recently allowed themselves to be reminded. I’ve needed this reminder. It’s true…they may see a monkey but at the end of the day I am just a giraffe, whether they see the monkey or a screwed up version of a giraffe or something else entirely. Really doesn’t matter. And people will continue to judge, but it is our own choice whether we put energy into battling their judgments or not. LIke you, I have chosen, after years of many battles, to give up that fight, and realized that at the end, you never win anything (and you certainly don’t get the energy back!)

    Best in all your endeavors, tell your boss thanks from all of us, and keep sharing…. it’s a gift!

    LostOnAHorse

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  30. the important thing is try to be… can I write in spanish? it´s complicated to me expres myself in english… Lo cierto es que a pesar de todo, sigas intentándolo… la vida no es fácil, para nadie es fácil… o para muchos, pero lo importante es seguir intentando, esforzarse sin importar cuántas veces se caigan… lo importante es el futuro y el presente y todo lo bueno que se ha conseguido a pesar de lo malo… Yo no tengo deficiencias, soy una persona “saludable”, y sin embargo, como a muchos, la vida me cuesta… pero me gusta una frase de the offspring… “life goes on, wipe these eyes, yesterday laughs, tomorrow cries…” because always will have difficult times… but life goes on… I like your post… Is intersting how you deal with your illnes… and you always have known that: You are a brave person… Keep your courage!!! :)

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  31. Having dealt and hopefully successfully conquered CFS enough to live a relatively normal life now, I’ve not only experienced exactly what you’ve written but have been guilty of now doling out advice to others based on my own experience. I’ve forgotten what it was like to receive so much “advice” while at the height of my illness, so I’ll be shutting up now unless specifically asked what it is that I did get myself back into the land of the living. Great post.

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  32. You expressed EXACTLY what I’ve felt so many times. I like your approach to dealing with this…I’m always tempted to try and explain, “no, I’ve done that…no, that won’t actually cure fibromyalgia…” but you’re right – we only have so much energy to use.

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  33. I love your writing. And You. I’m sorry you ever had to hear that crap. I hope you’re having more better days than worse days. Miss you! And I think you’re great no matter if you’re a monkey or a giraffe.

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  34. Hi Mary!

    Great post, as always! Reading about all those ignorant people giving you stupid advice, I had to think of what Albert Einstein said: “Two things are infinite: the universe and human stupidity. Though, I’m not quite sure about the universe.”

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  35. Love your blog. You’re a wonderful writer and I lOve that your authenticity shines through your words. As a “healthy” person (somewhat subjective, but I know I’m not living with a debilitating illness), I would love if you would write about some of the ways that strangers/acquaintances/coworkers/friends/family could better respond. I am a fairly sensitive person and always feel so inadequate when someone shares an illness and all I can think of is a) advice or b) “wow, I’m really sorry. Must be tough.”. You’ve shared how you feel about option a -and I totally get it – but option b seems thin. Thoughts?

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  36. I was born with arthritis. In every joint, no less. I’ve been poked, studied, prodded, advised, etc. The most effective thing that I’ve experienced has been compassion. Now THAT is medicinal. I hope you encounter a lot of compassion, Mary. Pain is oppressive, fatigue is excruciation and disruptive to our quality of life (I’m a mom to two small kids…it’s a whole other kind of fatigue.), but compassion from others is like medicine to me. I’m glad you are a writer, and that you can share with others what works for you, and what doesn’t. And I hope that you never feel alone.

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    1. i recently wrote a blog about the difference between when i had cancer and now. when i was going through chemo every stranger i encountered just knew what was going on. now, i’m still ill (with a different disease, porphyria)… but there’s no tell. i’m not bald now. i don’t have any physical indication that others would readily pick up on (esp. strangers)…

      and when i wrote that blog, a dear friend of mine shared “the spoon theory” with me. i LOVE it!!

      it’s so vindicating and comforting to just be understood.

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  37. You’re such a gifted writer, I really enjoy reading your blog and hope that you find some comfort and joy in writing it (you do seem too!) Keep doing what makes you happy!

    Like

  38. I just sent that to my parents…. “You know the pills you’re taking can be dangerous and addictive. You’re a smart girl.” Yeah, thanks. That solved… Nothing. I’m having trouble accepting it, however. A vague pain disorder is not my forte, if you will. And, I’m sick of the eye rolls from Drs, the ‘vitamin’ advice, and the categorization of me as a person because of my medical file. I’ve tried everything out there to try, and yet somehow people still believe the cure to be at Walgreens?! Er, sorry Mary, CVS?! Why the heck didn’t I think of that in ten years?! Crap. Guess I’m not a “smart girl” after all with that kind of advice, dad. Sometimes I like to give the eye roll back to that kind of advice. Maybe they can see what they’re missing at the Drs appointment.

    Like

  39. My how I get tired of the unsolicited advice! Well put. I am also at a point where I am trying to accept that I am just sick… I have a debilitating condition and it is not going away. Life is just going to have to work around that fact from now on.

    Cheers and happy hols!

    Like

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