Cranky Fibro Girl Manifesto

Dear Doctors, please take note of the following items:

-please do not walk into the exam room telegraphing the message of, “I’m right, and you’re wrong, because I am the doctor. Especially if we’re a new patient, and you’ve never seen us before.

-please understand that if we tell you that, on a scale of 1-10 our pain level is a 15, or a 20, WE NEED YOU TO GIVE US SOME RELIEF! RIGHT! NOW! Then we can chat.

-and on that note, when we do come to you in excruciating pain, please do not thrown useless information at us so as to convince us of your so-called brilliance. We don’t give a flying fuck about  how good you think you are. All we care about is, HOW SOON CAN YOU RELIEVE THIS PAIN?!

-please know that we have told the tale of our medical history approximately 87,000,000 times, and it seems to get longer every time. Plus it is a constant reminder to us of all that we have to live with, and all that we have lost.  So we’re not being difficult if we don’t tell it “exactly right.” We’re sad.

-we are so, so, SO tired.

-we really are doing the very best that we can

-I don’t care how many degrees you have or how much research you might have done; the truth is that you have no idea what we actually go through every single day. Not many people are strong enough to bear what we have to bear every single day of our lives.

-we are in pain Every. Single. Day. The fact that we don’t rip off our clothes, tear out our hair, and go running down the street naked and screaming is a fucking miracle.

-we have been dealing with this shit for a long fucking time. WE KNOW WHAT TO DO. We are the experts on our bodies, NOT YOU. So please listen to us and give us the respect that we deserve.

-please do not ask us what we have been doing to manage our symptoms and then disapprove of or disregard everything we say. Because we will cut you. Deep.

-when we talk to you as a patient and tell you intimate details about our health, we are trusting you. Do not betray this trust and turn this information into a weapon that you use against us to tell us how “bad” we are and how we are doing everything wrong.

-DO NOT TALK TO US ABOUT THE FOLLOWING ITEMS: going gluten free, taking vitamins and/or natural supplements, eating only organic foods, “natural” lifestyles, getting off of our medications, the latest “miracle cure” that you’ve recently just learned about and are now selling to your patients just like a car salesman, desperately hoping to make some commissions, etc.

-do not, DO NOT, under any circumstances whatsoever, especially if you have only known us for a total of seven minutes, and ESPECIALLY if you are not our primary doctor, but just the person who could work us in on an emergency basis, and whom we will never see again, say the following words: “My advice to you is to stop taking so many medications for all those different conditions, and to just figure out a way to ‘beat them one by one’.” Or if you do, then just go ahead and expect to be beaten to death with your stupid little doctor stool. BECAUSE YOU CLEARLY DESERVE IT!

-be wary of uttering the words, “support hose” to any woman under the age of 65.

-Also: if you only want to be around healthy people, THEN STOP BEING A FUCKING DOCTOR!

-You may be “very excited” about our case. You may think that we are “very interesting”. That’s cool for you, but for us? All we hear is “we don’t really know what the hell we’re doing, but won’t it be fun to find out?!” Um, NO!

-If have just given the medical assistant a detailed novella regarding the sinus and ear pain we are currently experiencing, do not enter the examination room and start off by asking us how many weeks pregnant we are.

-If we have already dealt with one round of the Hostile Alien Bacteria of a dire intestinal bacterial infection and then come in complaining about THE EXACT SAME SYMPTOMS, do not tell us that it is probably just our period. Because trust us, IT ISN’T.

-And most especially, it we come in complaining about what we are pretty damn sure by this time is the third round of this particular illness, DO NOT project your weight stuff onto us and suggest that this is a good thing for us in that we can probably use it to “take off a few pounds”. Because, ARE YOU TRYING TO MAKE US CRY?

-At the moment when we are strapped into an IV/high on medication/completely vulnerable in the stirrups/trapped by our connection to a tiny camera located on the inside of our body, etc., that is NOT the moment to announce to us that, “Hey, this is [so-and-so], and she is here today to learn how to do this procedure.” Seriously-don’t

-If you are performing a procedure on a specific body part that you do not personally own, and we begin to writhe in pain, and then you announce in the bored, disinterested voice of someone who has performed this procedure a million times and who doesn’t really see patients as individuals anymore that “you may begin to experience some cramping”, then I’m pretty sure that we are protected by law if we jump up off of the table and strangle you with your own catheter.

-Please believe us when we tell you that the progression of our illness and/or our recovery is not linear. And often there is no visible cause and effect between what happens in our life and the symptoms we do (or do not) experience.   Trust us when we tell you that if we ever do determine a consistent, repeatable pattern, there will be a party. And you will be invited. We promise-if that ever happens, you will know.

-As we see you many, many times a month, it is really not necessary for you to mention our weight at Every. Single. Appointment. Dude-WE KNOW. And the fact that we haven’t magically made it down to our “ideal weight” (whatever the fuck that means) does not mean that we are staying fat on purpose. We are not rebelling against you. We are not lazy slobs with no willpower who know better, but are just not doing what we’re supposed to be doing. It’s just that we kind of have a lot on our plate right now. It’s on our list, and we will get to it eventually. Just not right now.

-Please do not blame us if your treatment doesn’t work, or treat us as if we must have done something wrong to cause this. Sometimes things work for us, and sometimes things don’t. This means that the phrase, “So-what happened?” is NOT an appropriate response to this situation.

-DO NOT tell a girl who has come to you for help with a dermatological problem that you don’t know of anything that can help with her “alligator skin”.

-Never tell a fibromyalgia patient that they don’t have to worry because “this procedure won’t hurt”. Trust us. It will.

-At 4:00 am in the ER, when I am in so much pain that I’m being given medication that’s “a little stronger than morphine”, “cheerful banter” about how much you hate your wife is neither helpful nor funny.

-When we are napping in bed, waiting for our surgery, clearly hooked up to a CPAP machine, we do not need you to leave us a bunch of helpful pamphlets on sleep apnea. I THINK WE’VE GOT THAT ONE COVERED.

-Also: please do not scare us by coming into our room and asking leading questions about how you suspect we might have diabetes, without actually coming out and saying that you suspect we’ve got diabetes, especially since, by your own account, my test results are probably just being caused by the impact my illness is having on my poor body.

-When things are finally, FINALLY stabilizing, and the meds are working, THAT IS NOT THE TIME TO SAY, “You know, we really need to see about getting you off of some of these medications.”

-And while we’re on that note, unless you have a specific and immediate alternative to offer us right now, then you are NOT allowed to tell us that we are taking too many medications, and that we need to find a way to get off of them.

-Also: if the only help you can give us right now is yet another prescription for yet another medicine, do not hand it to us but then try to guilt/scare us into not using it. As in, “Oh, here’s some help-but don’t use the help. Because using it is bad. And so are if you use it.”

19 Responses leave one →
  1. 2009 December 5

    I hear your pain and frustration here, Jenny. I am so sorry that you have experienced this – and it sounds like it has been the norm rather than the exception.

    I am sure you speak for many patients when you say this.

    I hope that those who read this can understand the importance of being sensitive to everyone’s needs here – patient, provider, staff, etc – because when we work as a team on behalf of the patient who is hurting as you are – hopefully things get better.

    Again, so so sorry for so much hard in your struggle with fibro and totally empathizing with your anger here.

  2. 2009 December 7

    Thanks, Char. It is definitely a lot more frequent than it should be. At least I have learned through this that just because a doctor says something, that doesn’t mean that it is true, or right for me. And I can say so.

    Also, at least I get some great stories!

  3. 2009 December 7

    EXACTLY. EXACTLY. EXACTLY. I am printing this off and taking it to my primary care physician, whom I just yelled at! Thanks…so need this.

  4. 2009 December 7

    Oh, great! Let me know what he says.

  5. 2009 December 15
    Julianne permalink

    Hi,

    Wendy Lee Lynds passed this on to me. I am glad she did! Thank you for putting voice to so many of my own thoughts and experiences….I have had about 4 months of on going medical issues and so many F$&@ing”God complex” doctors to deal with. Reading this made me laugh and take a breath of relief that I am not alone.

    Thank you for sharing I am going to your facebook page and becoming a fan!

    Blessings!

  6. 2009 December 15

    Oh yea!! Thanks so much for stopping by. And I’m so glad I could make you laugh, and that you discovered the company of others who are also struggling with this. We need support!

  7. 2010 February 19

    Hi Jenny, I hope you haven’t closed the comments on this post because I’d really like to express a few thoughts.
    1) I know that you’re doing the best that you can. When you go to see a doctor, you’re not there for pleasantries; you’re there for help. AND, you’d really rather not go at all. Thus, the thought that even though you’re doing the best that you can, you’re seeking a doctor to help you because you actually need HELP.
    2) When you see a doctor who doesn’t get it, you can be dealing with (a) someone whose narrow mind is made up because he or she knows-it-all (and does not care to learn ANY more), (b) someone who has never experienced your level of pain and dysfunction (or has a loved one who is living through it), or (c) someone who never does any investigative reading beyond the newspaper or standard medical journals (probably only catching the highlights) and never hears any further education beyond the drug rep’s monthly spiel. (That explains the pushing of drug samples and the like. That’s all that this type of doc knows how to do!!!) I doubt if a normal, general practice doctor’s continuing education goes very far when it comes to the intricacies of Fibromyalgia, Chronic Fatigue Syndrome or chronic pain in general. Knowledge about the illnesses isn’t progressing or being offered to the general medical profession and they choose to leave the pain management issues up to the pain docs. (Heaven only knows what they know about Fibro and CFS!?????!)

    Well, in essence I’m agreeing with you. I hear your frustration in your colorful language, gal ;-), but I also hear your exasperation of not being able to get past this type of “doctor” situation.

    Sending you light, love and gentle hugs,
    Cinda Crawford

    **Edited to include only the parts I liked** :P

  8. 2010 March 7

    Update: Physician took this well. Kept it. This particular doc is understanding…good thing.

    Taking this to another doc (the “psych” one) – yeah, we shall see how that goes….

  9. 2010 March 8

    Oh good. A convert! :P

    Hope the next one is as receptive.

  10. 2010 April 6
    Kay permalink

    Hey, I am 20 and found out that I had FM last year after getting ill and the doctors not knowing what it was. I got told that it was all in my head for years, but the pain, fatigue etc. got worse. I finally got told I had it, when my mum told the doctors my family history, and told them my Gran has FM. Two and two were put together… at last.

    I agree with everything that you have said. I just hate it because some people including nurses don’t believe I have FM, as they try to tell me that I am too young to have it. WTF! Around 19/20 is when it can start to show in some people. I hate how narrow minded some people are, and how I’m not getting much help with the emotional side of things and everything else.

    My doctor thinks that I am depressed and that if I take anti-depressants that my mood and the pain due to my FM would sort it’s self out. My arse. It made my fatigue worse. I went hyper and then would crash out. Why do some doctors think anti-depressants are the solution for everything?!? He bullied me into taking them, as he wouldn’t give me ANY pain killers till I tried them. Have managed to get some pain killers now. Thank God, but it is not the point. I hate it how we are treated by some doctors. :(

  11. 2010 July 19

    @Kay-that’s terrible-as if we weren’t in ENOUGH pain, then we have to deal with horrible health care professionals like those. No one should ever be treated like that.

    I’m glad you’ve finally gotten some medicines that actually *help*.

  12. 2010 August 12

    I love this list, especially the one about weight. Even though I’m a big guy, I probably do more physical stuff in a day than the doctor trying to tell me about how exercise would really, really help.

    Sometimes I wonder, though, if I have FM so I can educate all the dumb-@$$ docs out there. Seems like I spend a lot of time in their offices giving lectures on sleep apnea, medications, and pain management.

    Keep up the good work!

  13. 2011 February 9

    I don’t know why I didn’t discover you until today. You are a genius, and I love you (in a totally sisterly way, of course). My doctor is mostly cool, and doesn’t often say stupid things. My family, friends and coworkers, on the other hand… oh lord, I want to stab them so hard sometimes. Thanks for this. I’m going to share relevant parts with relevantly clueless people.

  14. 2011 February 10

    @Bubba-it is so sad that alleged health care professionals *need* so much education about this stuff.

    @Kelly-thanks :) And I TOTALLY understand the stabby-ness.

  15. 2012 August 6
    TillySUe permalink

    I LOVE my doctor. Thank heavens. Now that I was diagnosed with fibro nearly a year ago (maybe? I dunno. Lost in the fog.) I really can see symptoms of fibromyalgia as long as 5+ years ago. I had a horrible ear infection that didn’t resp0nd to any antibiotics. The infection went into the bone and I had eartube surgery scheduled asap. The ENT said that I’d wake up in no pain and when children wake up from the surgery they usually don’t even know anythign has happened. I woke up in such SEVERE pain the nurse maxed me out on ibuprophen, morphine, dilaudid, numbing drops, and whatever else she could get approved. She hunted down my ENT and told him she would not send me home until he wrote a script for pain medication. Bless her heart! I’ve since had…5 or 6 (lost count) other surgeries, all of which left me in out of control levels of pain. My last one they put an epidural in and left it for several days afterward. Meds I was on for other things (Cymbalta for depression) covered the classic symptoms though! When I went off it about a year ago within two weeks I was in some of the worst pain of my life. Finally if made sense. No rheumatologists in the area can get me in, but thankfully my doctor cares. I’m now on maximum dosage of savella, cymbalta (just changed back to it a week ago), and flexeril, and I’m still fighting pain every stinkin’ day!!!!
    Hubs came with me to my last doctor appt to make sure I was taken seriously enough. We talked to the doctor about my symptoms and such, and he said “Let me tell you something about fibromyalgia…” (I was cringing, expecting some lecture about my weight, which has gone out of control, or my medications, or my “supposed” pain…) “It STINKS”. Oh. Yes, it does! Apparently his mother has fibromyalgia so he understands it, believes it, and stays up on the research and studies. Such a relief!

  16. 2013 April 15
    Nancy permalink

    I read the rest of your manifesto and I forgot to add that I have great doctors but the ER thinks I am crazy. The biggest loss of this fun fibro are; friends, family members, and my old friend, TIME LOSS. I have sent articles, stories and personal letters to previous BEST FRIENDS and they don’t believe me. It took years to get over the hurt. I still get my haircut at the same place my friends go and my hairdresser is always concerned w my health and understands that I can’t make an appointment until after three in the afternoon and still might oversleep. She informed me one of my besties was moving accross the country and wasn’t I excitied for her? HELL NO because she never calls. I am not the cool fast paced world traveler and workaholic I once was so I DON”t FIT IN. I have learned to love my couch so *&#^ them. At least my hair looks nice for a couple of days until the next appointment several months down the road. Yesterday I painted my nails polka dot to make me happy and wore a big ring (I had to remove it because the weight of it hurt) but my blanket and nails were HAPPY HAPPY because I try to make the couch a fun place. Maybe QVC will have something cute on today so I can hang it in the closet for when I go out along w all of my nice shoes and purses. My drawers are my haven they have very nice jammies; I love Karen Nueberger (SP?+ The other thing I dislike is being accused of being a pill popper. I quit drinking 16 years ago and have to be very careful w meds but I am sick of people questioning my use of meds. JUDGEMENTAL If only they could walk in our shoes for a month. I try to stay upbeat but it has been a rough bout lately so I better add something fun on the table that holds all of my treasures; medicine, water, a book or two that have been lying there for weeks when I use to read one book in a day or two. The MAIL oh I hate the Mail. It is such a huge task when I am in a fog. I give up and throw it all in a pretty Marshall’s bag to sort next year
    )

  17. 2014 July 2
    Paula permalink

    Thank you for all of this. Im 32, and have everything under the sun since age 14….
    I am printing these off, and sharing with my family. It made my day after putting pants on and going to the doctor to come home feeling like I just been through war. Thank you! You just have to laugh at life sometimes. especially “us”

  18. 2014 August 9
    Lisa Ammons permalink

    I ‘m new to this site, but several years into my Fibro. I just cussed out the office manager of my rheumatologist on Tues. over my bill. {P.S. I love my doctor,and he’s now getting treatment for 2 kinds of leukemia.] I’m normally passive in there,but I was fed the fuck up with the staff’s tx. of me. Their bad, cause once I get started, u better watch out, I’m old and I don’t give a shit any more! I’ve gotten to the point,after dealing with so many indifferent doctors, that I don’t know how to “act” anymore. I even said the “F” word a couple of times,[could't stop myself,BAADdd!], And I thought her southern Baptist head was going to spin around. She told me to calm down and stop using that word! I said ” I’ll use it if I want to, this is America!!! {Yeah, I can’t believe I said that either!] So then she says “Then we’re not going to see u, u need to leave!! Huhhh? I said i’m NOT leaving! All this went down in the waiting room, with 4-5 people in there. Told the recept. that I wanted to speak to my N.P. In a minute the WOMAN, comes back and tells me they’ll “work me in if I’ll just sit down.I said I had an appt. an hour ago!! But I did apologize for my language,[not what i said] and broke down in tears. Just a fews days before, I had no food in the house,out of basic stuff,etc. so I was already primed for a breakdown.On top of all that, my doc. had up new signs saying he would no longer rx. narcotics. N.P. says, ” If we trust u, it’ll be ok. See folks, because of wide-spread doping on pills, those of us who rely on them for daily living, get so scared. I hate having to take something to keep me from running over a cliff, but that’s where I am. Don’t want to live any more, but if I can’t get pain meds.,I’m outta here, no shit Sherlock!

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