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Misunderstanding
6 Replies
lacie - March 22

I'm sure we've all had many encounters with people who do not understand our condition. My mother used to have a difficult time understanding my pain. She is used to pain, but it's a very difficult kind than I experience.

Compared to most of you, I am fairly mobile. I was very active before the onset of my fibromyalgia. I am a full-time college student and have a part-time job, so I am constantly pushing myself to be "normal." I exercise frequently, going on long walks and bike rides. Stretching, yoga, and pilates have become mainstays in my daily life. As I've began to come to terms with my fibromyalgia and all that it entails, I have begun to give my body more breaks. Before I accepted my diagnosis, I would tell myself that I just needed to keep going, since work would not kill me. Now I tell myself to slow down, since pushing myself too much will be detrimental the next hour, day, week, etc.

I do have weekends where I just can't get myself out of bed. My limbs feel weighed down, and I can't fathom leaving bed, let alone doing normal day to day activities. Since I'm normally so active (relatively) it's difficult to feel this way. I spent this past Saturday sleeping the entire day. I felt so drained and hurt that sleeping seemed the best alternative for me. I rarely let myself sleep like this, since I've had to put myself on a strict sleep schedule to my fibromyalgia.

The next day I had a friend tell me that he wished he could "be as lazy" as me. I replied that I was not "being lazy," that I have a physical disability. His retort was that I was a joke; actual disabled people would never be able to do much of the things that I am able to do. My reply was that while I might not have a disability in the traditional sense, this is very much a disability.

My fibromyalgia is not constantly at the same pain level. While I am in pain at all times, some days it is much more manageable than others. It's very frustrating when you hear yourself being called "lazy." I know most of us have difficulties having others understand how fibromyalgia affects us (in addition to the fact that many people do not know what fibromyalgia is).

How do you deal with this? Does anyone else have days that fluctuate so radically? Has anyone else been hurt from being called "lazy," "dramatic," "exaggerating" from people close to you?

 

Fantod - March 24

Hi lacie - You are certainly not alone in your experience with other people's perception of Fibromyalgia (FMS). I am disabled due to FMS and on full SSD. However, the extent I can be, I am active. People who are disabled can be active and that should not diminish their disability in other peoples eyes.

Unfortunately, FMS is poorly understood not only by the people who have it, the people who treat it and the family members and friends who are supposed to be supportive. FMS is recognised by the Center for Disease Control and the National Arthitis Foundation. As you well know, it is not a figment of our collective imaginations.

Whenever I have an encounter with someone like your misinformed friend, I make an effort to gently educate them about my disability. Here is the Readers Digest version: Fibromyalgia is a disorder of the central nervous system that causes widespread pain and fatigue. The mechanism that causes it is not understoond. There is no cure but it can be managed to some extent with prescribed medication. It is very difficult for me plan my schedule due to pain and fatigue. There are always certain things that have to happen like work or school. Anything extra like dating or exercising is very difficult. Sometimes I have to force myself just to maintain some semblance of a normal life. There may be days that I am just too tired to get out of bed. I am not being lazy. I simply can not do anything else until I get sufficient rest. I am not being dramatic or exaggerating my symptoms. I live here and I must make the best judgement I can about what is needed to take care of my health. I value our friendship but your attitude is disrespectful and hurtful to me. Take some time to educate yourself about this syndrome prior to making judgements about the way I must live my life. If the tables were turned, I would want to fully understand why my friend/family memeber was having such a difficult time and be supportive.

I hope my comments are helpful to you. Take care.

 

Fantod - March 24

Also see the "Letter to Normals" in another post under this heading.

 

lacie - March 24

Fantod-

That was very helpful. Luckily my family is slowly coming to understand what I am going through. My boyfriend has been with me since before the onset of my FMS. He is very supportive of me though he doesn't really understand what I'm going through. I'm blessed that he is very open-minded and willing to understand and help me.

I mostly try not to tell anyone that something is wrong with me. Since I am a lot more functional than most people on the board, it doesn't come up often. I do have several occasions where I make plans with friends and simply don't feel up to it when the time comes and I have to cancel. My best friend knows what I'm going through, but I worry that the number of times I cancel for "feeling ill" will begin to seem like I'm blowing her off at some point.

Mostly I struggle with whether or not to tell people about my condition. Since most do not know much if anything about fibromyalgia (the most common response I get if someone does know is "ohhhh from that commercial on tv!") it seems like a waste of time to even tell people. It's only been a year since my diagnosis, so I'm still adjusting to this new turn in my life.

 

Fantod - March 24

Lacie - Go to amazon and buy the "Fibromyalgia for Dummies" book and lend it to people you know. Even if they don't read it in depth maybe a glance or two at the book will register. You could also share this site with them or the National Arthitis Foundation info on Fibromyalgia (use the "search" function to find it). Knowledge is power. Take care.

 

kvc33 - March 25

In your post you said that you are constantly pushing yourself to be "normal", that you are a full-time student, work part-time, and exercise regularly so why should you be surprised that that is what people see. I'm not trying to hurt your feelings here but if you want people to see your disability you must play the part, which means doing less and taking lots of breaks and explaining to people why you are taking those breaks at the time. People don't go by what someone says. The old saying "actions speak louder than words" comes into play. Yes, my family thinks I exaggerate even though I spend most of my time resting and everytime they ask me how I am I tell them I'm not well and a little about my symptoms. After fifteen years they still don't get it. When I'm in public I usually try to appear normal too and if someone comments that I don't SEEM disabled I agree with them and tell them that most disabilities are invisible. You can also tell your friends that there is a wide range when it comes to fibromyalgia, some have it severely and others have a mild case. As for me my pain is mild but my exhaustion is severe. I can not work, go to school, exercise or socialize. I have spent years of my life in bed.

 

tnichel - March 28

No offense, but screw him! I know exactly what you're going thru since I survived college while working 2 jobs and taking on a internship. However, please continue to make time for yourself. I think that's what ended my life after college. I did so much I worked myself into the condition I'm in now. (I basically only have energy to go to work and come home.) But I still don't have it as bad as others.

Now about your friend. I know how that must make you feel so try to brush it off...or maybe give him a pamphlet to read. If he still doesn't get it then he likely never will. And that's what we're here for. When you're in college, the average student can't understand and relate to your situation. They've never had to deal with anything like it and are still in the mode of forever young, no pain. Unless they have an ill family member then they probably don't have much experience with sick people and have never had to think about it. I used to go to parties and suffer thru it in high heels then I couldn't get out the bed the next day when my friends were going to do something fun. I actually had more of a problem seeing myself as lazy than anyone else.

From reading your post, I can tell you're a strong young lady and the habits you have adopted are good for you. Actually I think your history of an active lifestyle (yoga,etc.) will only help you in the long run. You just have to get better at pacing yourself. If you need the sleep then sleep. School work is draining but you're paying for that degree so that needs to come first next to keeping yourself healthy.

As far as your limbs feeling weighted, that's how my pain started out in high school. I'm not sure how you feel about this, but I see a pain management doctor who prescribed me a muscle relaxer to take it night. It helps to further loosen your muscle so they can recover while you sleep. I hardly ever get that feeling now unless I'm in a flare. I also take one during the day to keep my neck muscles from locking up. Again, it's your decision but that may help you alot. And you can always stop taking them if they don't work. I made the decision to see a pain doc b/c my others where hesistant to prescribe med to deal with the pain and aren't as up to date on new pain meds. My doc is great and if I don't like something he doesn't try to keep me on it. he also doesn't over prescribe. I pain doc will be able to manage all of your pain sympstoms including those not fibro related. As he explained to me he's there to make sure I'm taking as little meds as possible while treating multiple issues instead of a pill for each condition.

And the best thing for you is full disclosure. Not telling people (friends, family, lab partners...not acquantances [---i know i butchered that)what's going on with you could make things worse. You're keeping a part of yourself hidden which puts as strain on you mentally and physically. Your subconscious is a powerful thing. Again, give them info about fms. At least then you can say you tried to make them familiar with the condition and it puts the ball in their court to show what kind of friend they are. also your friends will understand if you have to cancel plans instead of feeling alienated. Fibrohugs and the best of luck!

kvc33, if you're still around then we should chat. Your situation is similar to mine.

 

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