“39 year old woman, looks like shit and in apparent hell.”

Today I read a post on a CFS forum titled “disappointed reaction from sister-in-law” which had me fired up in a way that is a rarity since I left my job. This woman had told her family she would not be able to attend a baptism on December 23rd and also be able to come over on Christmas Day to participate in all the festivities. Her sister-in-law asked, “Why? Are you sick?” and then, seemingly fed up with the CFS/ME/FM “excuse”, the sister-in-law decided to educate her on what the disease is and why she should be able to attend family functions. Why? Are you sick? My pulse is racing just typing that. It is utterly reprehensible that this disease is called chronic fatigue syndrome and that it is characterized by “post-exertional malaise” and that all medical tests are relatively normal and that we don’t look as sick as we are. It’s such an unbearable injustice to add this insult to injury.

It’s not just friends and family. I have given up talking to doctors after I realise they have zeroed in on my type-A personality or obsessive tendencies or the sleep problems I’ve had my whole life or the fear of getting sicker. It happens every time. I had a visit with a new sleep doctor today and I talked about my night sweats and then about how I’ve always been a light sleeper. I joked (kinda) that, even in sleep, I wanted to be sure I heard an intruder. Her next questions were about sexual abuse and anxiety and I realised I’d said too much. As a patient, you can’t really be 100% honest – because they’re DOCTORS, their job is to see what you don’t. However, I think the majority of the time patients are pretty self-aware. I had to steer her back. No, no, no, these night sweats aren’t from anxiety – they’re from death taking over my insides so all the fluid in my body is squeezed out of my pores over the course of eight hours. You can’t imagine how much fluid there is in a body. And my sleep problems now can’t be equated to my lifelong insomnia and lack of deep sleep – this year, I am tortured, thrashing, contorting in pain, in muscle spasms, constantly waking, never peaceful. Luckily, in the last three or four moths, I’ve gotten a handle on the sickly night sweats – by realising they were caused by over-exertion and took everything down to the “housebound” notch. But, my point was, I realised there wasn’t much point in recounting my story to this new doctor. She wouldn’t be able to shed any new light and, in fact, it was the opposite: it was a long appointment, it was difficult to tell her everything from the beginning, it was disheartening that she didn’t really say anything about my sleep – which is why I was there – and, in the end, she said she was leaving the practice at the end of the week. Wow. More wasted time, wasted energy, wasted money. But I had to go for insurance to cover my cpap machine. That’s the deal. That’s the racket.

I got off track: Why? Are you sick?

I used to say that I thought everyone in the world should work one week in a restaurant. That it should be mandatory in high school or college for each student to put in a minimum of 50 hours, rotating positions so that you have some concept of what it is all about. I usually would declare this after some moron degraded me or tried to pinch my ass or ordered something without looking at me, without saying please or thank you. And I mean ordered it – as in, gave me an order. I was an actor, so I’d smile through it. But really what I was thinking in my head was, you won’t get to me because I’m smarter than you, I make more money than you and I guarantee I’m happier than you. It worked for a long time. Until, one day, there was no amount of money that would have made me give one more performance.

Fast forward ten years and now I think everyone should spend one week in my house. Or the house of anyone with M.E. Actually, I wish we could all spend a week in a thousand different homes in a hundred different countries, expanding our understanding, knowledge and compassion…. But, this is what I know right now: this house, this disease. I wish the doctors and the friends and the employers and that lady’s sister-in-law could all live with this for a week. And I don’t even mean live with M.E. – I just mean live in the house with the person with M.E.

Let me narrate to you how I feel in the morning, the inventory I take of my body, the pain in my bones as I get up and dress. Let me talk to you about my food choices – what will cause me the least distress, what will help the nausea, what will be the least likely to aggravate the IBS, what I can make (or ask my husband to make) with no grains, dairy, gluten, legumes, or eggs. I will show you how I decide whether I have the energy to shower (involves standing up) or do laundry (involves going downstairs and leaning over) or empty the dish washer (reaching down and reaching up multiple times) or walk in the yard (involves boots, coat, cold, taking steps). I will tell you all day, every day how badly my head hurts and how much my hands ache and how broken my back is. You’ll be able to watch me grimace every time a dog barks and close my eyes when I walk into a room that doesn’t have a dimmer switch and massage my neck endlessly, have trouble getting out of my chair, walk like I’m crippled, cover my ears when the ads come on the tv, begging you to mute it. I can explain how every day I weigh the pros and cons of medications: Will this take care of the pain or give me vicious bounce-back headaches? Is it worth taking so much of this knowing the liver problems it can cause? Will I be able to tolerate the nausea, dizziness and insomnia of this long enough to let the good kick in? Will this help me sleep but not give me a hangover? Will this help my muscles enough that it justifies the bowel intolerance? Is this helping enough to justify the $60 price tag? Is this worth trying even though it suppresses my immune system? You’ll see how carefully I go to different areas of the house, how every trip is calculated: never, ever go from one room to another without taking something that needs to go there, too. No wasted movements. You’ll see how I plan phone calls on my calendar: no more than one a day and none on the days that I have doctor appointments. No wasted energy. And you’ll see how often I have to lie down in the dark and how early I go to bed and how quiet I’ve become. It’s very understandable why doctors would think I am depressed – my hair isn’t brushed, make up doesn’t exist in my life anymore, I have no energy for chipperness and no need to form connections by chit chatting. No wasted words.

Worse than doctors seeing the wrong thing, though, is doctors not seeing anything. I read my records from an appointment earlier this year – in the very sick, dark days – the notes said, “39 year old woman, well groomed and in no apparent distress.” All the fight just drained down my body, out of my feet and into the earth. I felt defeated and limp. I get it, this is how they describe their patients… certain terminology is used… But, if I wasn’t in apparent distress, then… Well, then, he needs to come live with me for a week. Maybe I’ll make him dinner and then we’ll walk around the block and have a lengthy, animated discussion …and then he can watch what happens the next day. He’ll be able to see how I curl up in a ball weeping from pain, unable to speak, unable to move, unable to eat. And maybe he’ll think, Distress is too small of a word. In fact, malaise doesn’t really cut it – and neither does fatigue. How about chronic persecution syndrome? How about post-exertional perdition?

Are we sick? Yes. We’d rather not have to plan every hour and foresee every hurdle. We’d rather not isolate ourselves and lose contact with those we love. We’d rather be at every baptism and birthday and Christmas celebration and dinner date. In fact, given the chance, I’d guess that people with ME/CFS as a whole, would be the life of every party. We’d be the ones dancing, singing, eating and drinking until the wee hours of the morning. Wasting as much energy and as many movements and words as possible. 39 year old woman, dressed to kill and apparently having a ball.

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11 thoughts on ““39 year old woman, looks like shit and in apparent hell.”

  1. stacie says:

    I feel exactly the same about all, and especially the part about doctors who don’t really pay attention or side track us to blaming our smallest of health issues as being the sole reason we don’t feel well. Mine kept saying allergies and sinus was the cause of all my fatigue and headaches. That very well may be in some cases, but not for YEARS and not this prpfound fatigue! I wish I had energy to respond more but basically I agree completely!

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    • E. Milo says:

      That’s one of the drawbacks of specialists ~ they only look at their specialty. I’ll give the sleep doctor credit: she definitely wanted my CFS backstory and not just the info about my sleep apnea. That’s thorough!

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  2. Reva says:

    So so true. I’ve been relatively lucky over the years, bah one doctor who’s discrimination probably delayed my diagnosis by about three years. But I’ve recently been becoming more frustrated by the discrepancies between the name and the disease. Thank you for sharing 🙂

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    • E. Milo says:

      I’ve actually been lucky, too, when it comes to caring doctors. The dispicable part is how few doctors know anything about ME/CFS and, those that do, are reluctant to talk about it. Why is it such a dirty diagnosis? I basically had to tell my GP, “I know I have this, why can’t any doctor actually say the words?”

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  3. triciaruth says:

    I have fortunately found great doctors recently who have helped and listened and BELIEVED and trusted that I know my body but that was after 13-years of being fobbed of that I was just “unfit”, “a bit run-down” with the subtext of “lazy”.
    Also, I’ve spoken to people about the disease and they’ve said “yes, I’ve been/I know people who are depressed too” or something similar. Frustrating. Yes, having the disease can become depressing at times when the weight of it all hits you but it is not depression.

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    • E. Milo says:

      You know, I hate to say this out loud, but there have been times when I’m talking to doctors where I feel a little grateful that I’ve never had depression or been obese or been on anti-anxiety drugs or have a history of drug abuse or I’m not unemployed (in the beginning) ~ there must be so much subtle dicrimination. I know doctors have to rule out all those other causes, but it would be really scary to have this (VERY PHYSICAL) disease and have someone tell you/imply that it’s in your head or because your fat etc. Oh, I shudder to imagine…

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  4. Anna says:

    You’re such a good writer. If you’re feeling stagnant because of all of this, take solace in the fact that you are being immensely productive in this way.

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  5. […] were practical questions and I appreciated her thorough investigative work, honestly. In my other post, I was merely trying to point out that, in an effort to conserve energy, words and effort, the […]

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  6. Curiosity says:

    I had a specialist write something in a report about how I was “resting comfortably” during our appointment. Are you kidding me?? I had my wheelchair reclined because if I sat up further all hell would break loose with my O.I. symptoms. And I was anything but comfortable.

    Maybe it’s my own fault. I’ve learned to hide the discomfort because it seems to cause doctors to think you’re less reasonable/rational if they can also tell how much physical distress you’re in.

    I love the way you’ve structured this post with that last line. 🙂

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  7. Kari says:

    I can relate to all your posts, you describe how I feel and all I have been experiencing with this awful disease. Thank you for taking the time and energy to give all of us a voice. Also, I moved to the Seattle area almost a year ago and desperately need a GP here, would you mind emailing me? Thanks 🙂

    Like

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