Thursday, August 27, 2009

"Have you tried (insert remedy here)?"

Something odd happens when you tell people you have chronic fatigue syndrome.
People’s reactions are not often quite what you’d normally expect following the disclosure of a very serious and debilitating illness. Typically, there are a few standard responses. Below are some of the more common replies I've had in the 13 years I've been ill.

First, there is often laughter. Yes, sometimes people actually laugh. They then usually make a variation of the same joke, something along the lines of "Oh, I think I have that, too!!" Or, "Yes, and don't we all!!" I also once even had someone say to me, "Man, they make up syndrome names for every little thing now, don't they?!"

Other times people are able to restrain their amusement to some degree, and simply smile. They smile because they think you basically just told them that you're a hypochondriac who can't really cope well with life.

And then, of course, there are the rare instances when you meet someone who actually is informed about CFS, knows someone who has it, or who is just generally compassionate, and they thus respond to you with sympathy and kindness. But this happens far less frequently than it really should.

I find that, most often, when you tell people you have CFS, you get unsolicited advice. This used to surprise me: the idea that someone who had no real conceptual idea of CFS or the pathogenesis involved could be so certain they had all the answers for me. I often would wonder if I instead had MS, cancer or late stage AIDS (illnesses that the CDC equates CFS to in terms of symptom severity and disability), would they be so quick to offer a fast and easy remedy?

Now, don’t get me wrong. Most of these suggestions, especially when coming from caring friends or relatives, are all very well intentioned, and sometimes they can actually be of value. For the most part, I find people quite genuinely want to help. And, of course, suggestions from fellow PWC’s and others aware of CFS are ALWAYS welcomed. One unquestionably wants to hear what others in a similar situation did with any measure of success. I’m referring here primarily to the passing suggestions of strangers & acquaintances who don’t otherwise know me, or have any idea what chronic fatigue syndrome is even about. And don’t get me started on doctors. ;)

For the sake of amusement, here are some of the more memorable "Have you tried....?" type of suggestions I've received at one point or another in the many years I’ve been ill.
  • "Have you tried drinking extra coffee in the morning? I couldn’t get through the day without a lot of coffee either".
  • "Have you tried drinking Jolt or Mountain Dew? How about No Doz? That stuff will totally rev you up."
  • "You may be depressed and not even realize it. Have you tried seeing a therapist?"
  • "Have you considered just taking naps?"
  • "Have you tried smoking marijuana? It’s very calming."
  • "Have you tried drinking Sleepytime tea at night? It always knocks me out and I wake up feeling great!"
  • "You look fine to me. You just need to get motivated!"
  • "You probably just need some iron. Have you tried taking iron?"
  • "I’d be tired too if I sat around doing nothing all day. Have you tried taking up a hobby?"
  • "Are you getting enough sex?"
  • "Why don’t you just ignore it? I get tired, too, but I don’t let it interfere with my life."
  • "Have you tried splashing water on your face throughout the day?"
  • "You just need to exercise! Exercise is great for energy. Have you tried step aerobics? I feel great after step aerobics."
  • When magnetic therapy didn’t work for me: "Wow, I'm shocked it didn't help you. Magnetic therapy always helps with fatigue. Have you tried seeing a doctor? You might actually be sick or something."
  • "You are lovable and worthy of being well. You know that, right? You won’t get well until you can love yourself."
  • "You create your own reality with your thoughts. As within, so without. If you are sick, it’s only because you’re thinking all the wrong thoughts."
  • "Have you tried eating sugar for an energy rush?"
  • "Have you tried eating less sugar to avoid energy rushes?"
  • "What benefits do you think you get from being sick that might be keeping you ill?"
  • And among my favorites: "Do you pray? God will heal you if you just pray." (Yes, I pray). "Well, you are clearly not praying hard enough, Sweetie."

Again, I know these suggestions are all well intentioned, of course. With a name like chronic fatigue syndrome, it's easy for people to assume you are just sleepy all the time, as that’s what the ridiculous name implies. And such a problem can surely be easily remedied. After all, it's true: who HASN’T been chronically tired at some point in their life?

But CFS is not about being tired. It's about being sick. It's about immune system dysfunction, mitochondrial damage, and disturbances in the endocrine, cardiovascular and autonomic nervous systems. It's about viral activations/reactivations, gut dysbiosis, orthostatic intolerance, problems with oxidative phosphorylation, blocks in methylation cycles, changes in genetic expressions, glutathione depletion, oxygen toxicity/cellular hypoxia, diastolic cardiomyopathies, and delayed low V02 max (maximal oxygen utilization) following exercise or exertion.

So, as much as I appreciated the above-mentioned suggestions, I'm afraid a cup of coffee and a few splashes of water on my face isn't quite going to do the trick. But what the heck, I'm willing to try anything. ;)

18 comments:

  1. This is so, so true. My sister keeps telling me to go to counseling. It's as if she feels she's done her part by telling me that. Your list was great. There's also the "if you think positively you'll attract health"

    This was so refreshing to read. Thanks for posting.

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  2. You had me laughing. Don't we all have this happen? It can also be annoying when a friend with ME-CFS tries to convince you that whatever she is trying right now is the solution to both of our problems.

    Keep praying and eating sugar, LOL Did you know they actually did a study showing that a little bit of chocolate helped people with CFS?

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  3. I'm pretty comvinced you and I are talking to the same people... My own mother-in-law -- who is a Registered Nurse, by the way -- thinks that most people with CFS are depressed. It is heartbreaking.

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  4. As far as remedies, I got nuthin'. Or, at least I'm sure I got nuthin' you don't already know about.

    But here's a "Have you tried ..." for dealing with the advice-givers. Have you tried saying you have myalgic encephalomyelitis instead of chronic fatigue syndrome? Very few people even know what that is, so you're likely to get fewer "Oh, I get tired too" responses.

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  5. Hi I saw your post on my Google alerts and thought I'd stop by.

    I see with your links and comments you have also got Lyme in the mix.
    Just interested to hear what have you tried treating lyme with.

    I was diagnosed ME/CFS but then by accident GP suspected lyme after a chance course of antibiotics improved my symptoms.
    Now 2 1/2 years later i have my health back and can enjoy life again.
    Apart from everyone's opinions with Lyme you get that glazed over look or averted eyes. After all how can our health departments have got anything wrong.

    The latest IDSA review panel had some amazing presentations from ILADS doctors but I can't see IDSA eating humble pie I suspect they will be too busy guarding their backs than taking appropriate steps to help us.

    good luck with your treatment and congratulations to both of you on your engagement.

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  6. Sorry I see now you have posted on Lyme treatment what a pity you haven't found something that has helped you. We all seem to react differently to different antibiotics on different symptoms. don't give up trying.

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  7. Gosh...now I feel bad because I was going to leave you a suggestion..I guess that people are always trying to help others but don't realize that it isn't always appreciated.

    If you do want to hear what I was going to say...just contact me.

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  8. Thanks for all the comments, though it's unfortunate so many of us have had the same experience!

    Thanks to all the new visitors, too. Joanne -- so good to hear you are doing better on antibiotics! And yes, I will never give up trying. :-)

    Cinderkeys.. sometimes I say I have M.E., but then that usually leads me to having to explain it's also called CFS, and the smiles and jokes then ensue. ;) Actually, since I am now so sick I am bedbound and unable to speak above a whisper, the jokes don't tend to happen anymore. I hardly see anyone but family and helpers now. But it's always hard to have to explain to someone new.

    Avery, I checked your profile but you don't have any contact info. Not sure if you saw that I mentioned that I know the suggestions are well intentioned and that people genuinely want to help, or that suggestions from people who are CFS aware are always more than welcomed.

    I don't know if you have CFS, but if not, it may be harder to realize how funny (and sad) it is when someone tells you to just have a cup of coffee and splash water on your face. :) Most people who are ill with comparable illnesses don't tend to get such trivial suggestions. So that is what I was referring to. Was just trying to have some fun with it. :) And perhaps help some who may not be fully aware of what CFS truly entails.

    But if you have something you think may help me, then of course share it with me. As I said, I'm willing to try anything, so long as it won't actually make me worse. :)

    Speaking of, off to have me some chocolate. ;)

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  9. So I just noticed that my comment from yesterday didn't come out the way I thought it did when I wrote it (brain fog, I suppose). What I meant to say was that my mother-in-law thinks that most people with CFS are not really sick and are just depressed (and that's why they have CFS).

    Also, your post couldn't have been more timely. Just today I got an unsolicited email through my blog from someone trying to sell me a product that is supposed to improve all my "various ailments"... Sheesh!

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  10. Oh, no worries -- I knew what you meant, Alyson! Unfortunately, I think your mother in law's idea of CFS is still the mindset of many people even today. The depression comment has been said to me from too many people to count, including doctors and nurses. It is very frustrating.

    Interesting about someone contacting you through your blog yesterday trying to sell you something to cure you. I'm actually now having to moderate comments before they are posted for that reason -- started to get spam/product advertising.

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  11. Thanks for writing this. I've often wondered if others who are chronically ill with other illnesses get the same questions, odd laughter & smiles, and suggestions that vitamins will cure anything. I know the comments & questions are well intentioned, but since this illness makes long conversations & explaining difficult, it's just very frustrating. I'm very thankful to have a family that is extremely understanding & supportive. I know that some don't. I've had an unusually rough week because I had to go to the Dr. for a routine test. I know that friends and acquaintances don't understand that even a Dr. trip leaves me suffering more than usual. I've found that Facebook helps me feel less isolated because I can "chat" with others in short little bits when even composing whole sentences is a strain on me. So, thanks again for using some of your energy to reach out with your blog:)

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  12. Thanks, Beacheejanne. I can relate to everything you said as well. It's really unfortunate all the misunderstandings that come with this illness -- the difficulty we have in communication/interaction makes it all the more difficult to correct those misunderstandings. Sorry to hear of your rough week. Hang in there! And thanks for your comments. :-)

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  13. Laurel,

    Many of your examples are so familiar.
    Then there are the people who, when you mention being ill and housebound for a long time, just act like you didn't say anything at all and go on with whatever they were talking about.

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  14. So true, Jody! I think sometimes people don't know how to react, or what to say. Or maybe they just don't want to hear it. ;)

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  15. "Wow, you may really be sick, have you seen a doctor?" <- I laughed out loud at that one. Of course, I don't often come in contact with new people who don't realize how sick I am. It also helps somewhat that I can tell them I have fibromyalgia AND ME/CFS, since for some reason people seem to be more familiar with and "believe" in Fibro. It seems everyone knows someone who has it around here. Of course, my second cousin twice removed or something is able to manage hers with regular exercise, so obviously she doesn't have CFS as well.

    Anyway, I loved your list. I get all kinds of supplement suggestions, and I ALWAYS ask that person if they want to pay for it, since I'm on disability and can't even afford to eat healthy. That shuts them up real quick!

    And if you want some ammunition against that depression crap, you can tell them you know someone who was severely depressed since she was SEVEN years old, often suicidal, and is no longer depressed though she has CFS. My depression got better even as my physical health got worse. I've been in and out of therapy my whole life, finally found a fantastic therapist to help me deal with my emotions, and lo and behold my body is sicker than ever. So there goes that theory. It is hard enough being chronically ill without people telling you it is all in your head. I'm living proof that it is not. And even if someone is depressed on top of your physical illness, it's understandable. Who wouldn't feel depressed after being robbed of their entire life?

    Well, I'm ranting to the choir, I know. So thanks again for posting this, the more people who speak up against the ridiculous advice we get, the better!

    Many hugs :)

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  16. Loved your comments, perpetualspiral. Thanks for visiting my blog!

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  17. OH yes one more thing, don't forget "you just need to take your vitamins, especially vitamin B," etc. Forgive the brain fog if this was already mentioned. It is soooo sad how ignorant people are about CFS!

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  18. love that list! My favorite is "Have you tried wearing warm woollen socks to bed?" That was a doozy...along with "maybe you just need to fall in love."

    I also love it when people say, 'Have you tried St John Wort'...'Yes, I have, no luck'...'Oh! But have you tried organic St Johns Wort'...'Yes, I have, still no luck'...'But did you try organic St John's Wort mixed with essense of cow's liver every morning at 4.48am?'...

    After a few interactions like this I learnt to LIE, LIE, LIE. I answer yes to every single question the person comes up with.

    Best wishes,
    Emma
    The Chronic Meditator
    http://chronicmeditator.blogspot.com/

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