Friday, August 19, 2011

Tired of Being Misunderstood

As if living with these illnesses isn’t hard enough, we also have to deal with the misconceptions that go along with them. 

For the first few years after my diagnosis, I hardly mentioned my illness to anyone. During college I found I had taken on more than I could handle, and so I began mentioning my illness to professors and others who needed to know what was going on. Doing so made me realize how misinformed people are. 

I quickly learned I had to explain my illness to anyone I mentioned it to. Few people were familiar with it. Those who were either had a relative with fibromyalgia or had seen “that episode” of The Golden Girls (a two part episode called “Sick and Tired,” in which one of the main characters, Dorothy, is diagnosed with chronic fatigue syndrome after a struggle for a diagnosis). 

Trying to explain these illnesses or counter misconceptions was exhausting. Most responses were along the lines of “What’s that?” or “Oh, would you like me to get you a cup of coffee?” A few people have even confused my illness with narcolepsy. 

I’d constantly be told to go home and get some sleep; I found it aggravating because I knew sleeping wouldn’t make me feel any less tired and I didn’t want to sleep my life away. It seemed like no matter how many times I explained that to people, they still ended up telling me to go get some rest.

Mentions of pain were followed by offers of Tylenol. Did people honestly think that I’d complain about pain if a simple over-the-counter pain reliever alleviated it?

Even worse is dealing with doctors. They have told me everything from I’m just depressed to I just need to exercise. Others have sent me to the emergency room because of all the symptoms I have.

One time, I was sent to the emergency room because my pain that day happened to be in my chest and, as usual, I had numbness and tingling in my arms. The emergency room doctor asked if I was experiencing any fatigue, and to make sure he understood that wasn’t unusual for me, I mentioned my illness. He looked at me and asked, “And just who diagnosed you with that?” I could tell by the way he said it that he thought I was a hypochondriac. After the test results came back, the doctor told me that the pain was probably nothing, but if it got worse to make an appointment with a cardiologist. 

We also have to deal with a lack of respect. We don’t look sick, so people assume it can’t be that bad. Additionally, everyone gets tired, and those who are overworked certainly feel exhausted all the time. Everyone has also dealt with pain to some degree, as well as many other of the symptoms we have. What they don’t understand is the severity and the fact that it doesn’t go away. Not only is the fatigue so bad that even sitting up can be difficult, but there are also the rest of the symptoms that come, go, and vary constantly.

I have come to accept that some people will never understand these illnesses. I do my best to educate those who are willing to learn about them, while trying not to be bothered by those who don’t get it.

On a positive note, awareness is slowly improving. Just in the past few years I have noticed a difference in the amount of people who have at least heard of these illnesses. Most people still need to be filled in on what exactly they are, but it’s a start. 

What is the most frustrating thing anyone has ever said to you?


  1. "Yeah, we're all getting older. You're just out of shape. You need to get some exercise."
    "You just need to lose some weight."

  2. "You need to lose weight and exercise" is possibly the most frustrating, but "But you don;t LOOK sick!" is up there.... oddly enough I feel there is less stigma attached to my Bipolar disorder than to Fibromyalgia. I've had fibro since 1992 and I still find it incredibly frustrating....

  3. I was diagnosed with FMS/CFS about 11yrs ago, however spent years prior to that searching high & low-Dr. to Dr. trying to find out what was wrong with me! So not sure of exactly when the onset began, but I knew I wasn't depressed, as many Dr's tried to say! Anyway, my ex-husband said to me the other night during an awful argument, that he knew people with my disease that worked every day just fine! He also said I am "a fat lazy bitch that deserved everything I got!" Not that raising a baby/child solo for 13yrs counts for anything (I had to leave my husband when I was 7 months pregnant.) I recently made the mistake of sharing my disease with him (& his current wife!) He said I could have worked before my disease (???) & my own fault for my financial troubles! I did work before I married him~very short marriage where the only good that came from it was our son! I've tried my best to explain how awful FMS is, sent him literature, etc..-told him he has no idea how it feels to hurt so badly you can't get out of bed, bend over, even function! Every person experiences it differently! If he only knew how bad & hard it was raising a child (he got/gets age appropriate visitation,) basically alone with these diseases, then be almost crucified b/c I didn't work a paying job too! Did not tell him about my health until for all these years (about 13,) b/c he's an angry person--fought 2yrs in court-half of which I was still pregnant--thank God I was awarded primary custody & child support! So feared he would use anything, like my FMS/CFS to take my son away! Which indeed, now that I'm almost facing foreclosure on my home, and trying to figure out how to pay the $238.00 electric bill this month...he knows I don't have the money I used to have! Perfect for him, he said go ahead take me to court! I'll bury your *ss so bad and you'll never lay eyes on him (our child) again! You have nothing, you are nothing...but a fat lazy B, who could have worked... It's all ur own fault, etc.! Little does he know the days/wks/yrs I've prayed thru the pain & maddening fatigue, ruined my liver w/ meds to function, and each passing argument, stress, and financial problems triggers the FMS/CFS to get worse & worse to now I spend more time in bed than ever, just to name 1 effect! So tired of trying to defend myself and explain! He'll never get it--& kills me that my son hears what he says! His step-mother told me that my son would have much more respect for me if I worked (when I'm thinking I just pray I can get out of bed each day & function like a normal person! Not fall asleep while I sit down or cry from the pain!) Just an ugly sad mess~however that by far is the worst thing anyone has ever said to me about FMS!!!

  4. If been suffering with Fibro for almost twenty-five long years, most of which I have wiggled through with minimal (5lbs) weight gain, in fact, I even went through a few years of being to thin, a result of IBS associated with the Fibro, not being able to eat properly because most foods made me feel ill.
    A little over three years ago my Fibro took a turn for the worse, and have been really struggling with more pain and not just fatigue but severe fatigue during the day accompanied with insomnia at night. I was referred to a rhuematologist by my GP, which at first he seemed like a godsend, being only one of a very few doctors in my area who is willing to treat Fibro. He prescribed me Lyrica, hesitant to take it because of sensitivities to all medications, I took it. By the third week I had gained almost thirty pounds. The doctor said that it was a side effect of the medication but to keep taking it, my body needs more time to get used it he had said. Three days later, another ten pounds heavier, I woke up to find that my feet were incredibly swollen, I couldn't walk on my feet, and when I did put my foot on the ground it would jiggle like a bowl of jello, by the end of the day and no returned phone call from the doctor I took it upon myself to go off the medicine. Three and a half years later I'm still struggling to lose this weight, and I've tried everything.
    I have spoken to my GP about my concern with my rhuemotolgist, I Even spoke to my GYN, feeling like no one is listening to me. In fact, both doctors, my GYM and my GP recommends that I continue to see this doctor because regardless of my experience they say, he is one of the only doctors who treats Fibro and feels that he is more of a benefit to me than a hindrance.
    About a year ago, this Rhuemotolgist began telling me that I should try to lose some weight....really? Because I have tried and nothing works, not even suffering through the pain of exercising to try to lose a few pounds. But I have to say this, last week he crossed the line. He actually told me that the reason my Fibro is so bad is because i am so fat, I am obese and that I should start exercising. and if I lost some weight I would feel better and I might even be a pretty lady if I did. OMG is all I could say and all I could myself think for two days.
    My pain was worse before I gained the weight and the reason I went to him in the first place. I am honestly at a loss for words. The one doctor who is supposed to treat this disease and is supposed to be one of the few who understands it - doesn't understand it all. Needless to say I am on a search for a new doctor!

  5. Far too many doctors have a god complex! If they can't fix you then it must be your fault! Losing weight is not the answer; I went from a size 14 down to a size 10 and my pain worsened.
    And unless you can afford the luxury of a heated pool then regular exercize is hardly an option. Frankly I am tired of some people thinking either I am 'milking it' or have a mental disorder. Then there are the non-believers! It is endless, often frustrating to the point of tears. There will never be an answer as long as the AMA keeps trying to suppress the symtoms rather than search for the cause, and that goes for most illnesses as well!

  6. A family member told me that it would best if I pretended that I wasn't sick & to just ignore the symptoms. I was devastated by that one.

  7. When a 70 year old co-worker said to me I need to suck it up and that every woman goes through Fibromyalgia and that she has it and is fine. Like Fibromyalgia is like menopause. I was so angry she had no idea what Fibromyalgia is or what I go through.

  8. I think it hurts the most when loved ones say these things. I really feel for those who have gone through that. There is also a huge range in severity and it seems like everyone knows someone with a mild case of fibro. It is very frustrating when people try and make comparisons to that mild case.

  9. I could fill up several pages with all the rude, cold, misinformed ignorant comments I've received over the years and continue to receive, but i'm having trouble sitting here at the computer and my arms hurt really badly, so typing is hard tonight. One of the worst things someone said was a close relative who called me hypochondriac and psychosomatic for years and acted disgusted and embarrassed by me. It really hurts when those closest to you say negative things and don't even try to learn about how you have to live. I'm constantly told by my husband how I "downplay' how bad I feel. I do this mainly to try to behave as normally as I can for the sake of my kids, but also because It gets old and tiresome having to answer questions and explain things to strangers or even people I know. I keep my answers short most of the time. The second worst comment I received was when a neighbor(nurse) and mother of my daughters old friend had previously shown great concern for me , watching me struggle, and when I finally got my diagnosis, said to me "that's just what they tell people when they don't know what's wrong with them". Really hurt to hear a medical professional speak like that, I thought she'd be understanding and supportive as she had been before my conditions had names. Also a Dr. who looked at my blood work, threw up his hands(literally) and said, "I don't know what's wrong with you". and sent me on my way. I'm currently still undergoing many tests and each new appt. leads to more tests, new Drs. and other tests and appts. It's taken me over 20 yrs. to get diagnosed, but I haven't been able to drive or work even part time for about 5 yrs., and I struggle daily much more than people know. People think we're out for attention, when I try very hard to hide how bad I feel and even joke about it, etc. took a long time(and several falls) to get me to give in to using a cane, but I sometimes leave it in the car so I won't have to talk to people about my health. When I go out, I want to escape for a while and try to be normal, even though just getting ready to go anywhere(or out of bed and showered for that matter)is very hard. Instead of educating people like I use to try to do, I keep my answers short, unless they really want to hear about it. Just visiting is exhausting and painful, so I try to prioritize what is worth putting myself through the pain and exhaustion for. Okay, now i'm having bad cramps in my hands, my jaw, head and neck hurt and my entire back and legs are having spasms. I'm done, though I could(unfortunately) go on with many, many other examples.

  10. To "Anonymous" currently seeing the appalling Rheumatologist: if you live in the US, please check out the Provider Directory of the National Fibromyalgia Association's website - all patient recommendations (link below). I am speaking from personal experience when I say I found my current Rheumatologist through this site when I knew I reached the end with my previous doc & my treatment has been nothing less than exceptional. Seeking a doc that specializes in fibro was key for my treatment. Good luck!