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Why do people act like its a joke??

I was diagnosed with Sjogren’s syndrome and possibly Fibromyalgia. I never use to miss work however this year I have missed about 10 days due to severe stomach problems.    The attacks would come about every three months at first and last for about a week to two weeks.  I would usually miss a day or two of work before I could bring myself to go back and act normal.  The last time the problems did not go away, the continued for about two months with maybe a day or two of relief here and there.  I had checked into the ER on three different occasions and the last time they finally did tests that told them what my problems were.  I returned to work and sat with my bosses and told them what had been going on.  I explained that I would in time be able to get this under control.  One boss was only concerned that I did what it took to be well.  Unfortunately he was let go a few week later.  Please do not misunderstand I have not missed work since.  I have to travel with my job and yesterday was the first time that I returned to taking my day trips out of state.  They can be quite difficult even for a well person.  Up at 3:00am and you do not make it through the door until about 7:30.  I have found out that my other boss seems to think that this is just some big joke, I have heard from others in the office that Fibromyalgia is just a made up diagnoses for people that think something is wrong with them.  I never speak of my illness; the few times that it has come up I seem to get funny looks as though I’m faking.  Today, I’m extremely tired and having trouble with my legs.  My legs are very week I feel like they are going to give away on me.  Has anyone had this kind of trouble?  Why do people think that Fibromyalgia and Sjogren’s is no big deal?  Or maybe I should ask why do they think that I’m lying?   I keep trying to read about Sjogren’s and Fibro but I would much rather speak to someone from experience that does not view me as someone trying to fake an illness.  I have a cousin in Virginia that is a nurse practitioner and she even told me “Oh you just need a vacation” Can someone please help me make some since out of this whole situation?  I’m not a depressed person however I’m starting to feel depressed due to the fact that I feel like an outcast.  I have a very high pressure job and as far as I can tell my work is not suffering, I never say a word about being ill at work, meet all deadlines and continue to push myself to do the best that I can, however when Saturday comes I find it very hard to just get my normal cleaning complete.  I appreciate any help you may be able to share with me.
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Avatar universal
Hi Barb,
I'm so sorry to hear how you've been treated and sneered upon while suffering your illnesses and trying to stay strong.  I am a perfect example of someone who has been fighting and coping with FM.  I have had this approximately 10 or more years now, and at first, they ruled it out, and again, until finally I was told I was suffering from FM, but not until it got so bad, that I too, was missing work, a day here, then two in a row, to the point where it was so bad, that I could barely get out of bed, or find the energy to even think about getting ready to hit the office.  I was in a fog daily because of lack of sleep, and was also diagnosed with Chronic Fatigue syndrome.  It has been years since I slept an actual 7-8 hours night.  My legs are in pain especially if I sit for any length of time over 30 minutes, with numbing and gnawing and tingling, like dead limbs.  

I have hit the max of meds that can treat FM, and now I am without any pain relief at all.  I suffer through it until I can't take anymore.  Unfortunately, while one could figure out what was wrong, I fought to keep working and took over the counter meds to ease the pain throughout my work day, thus leading to approx 500 extra strength tylenols or more per month.  They eventually did damage to my liver.  

No one understands what we FM patients go through on a daily basis and until the experience what we do, I don't think most people will ever understand.  Once one person labels it as a "fake" disease the word vastly gets around.  I don't worry about what others think anymore, because it only added to my illness, and why should we care?  If you don't see the illness you won't understand it, and most illnesses you CANNOT see....They funny thing is, more hidden illness are the painful ones.  A person who cannot hear or cannot see, is yes, disabled and people feel for them, as they should.  But what about the people who suffer a hidden pain, enduring this pain on a daily basis, unable to do the simplest of things we need to do for our life.  

I have learned to minimize what I can and cannot do.  I have lost so much, including soon to loose my permanent job, but I look at it this way....I wasn't living, I was dying inside.  Now, I just find the good things in life, so if today, my leg doesn't hurt, I put my mind to that, because tomorrow, I don't know what will be in pain....

Learn to cope with your illness whatever that may be, and if others do not understand maybe it's time to send them some anonymous information, and put a heading on it....Most illnesses are silent or blind to the naked eye, but it doesn't mean it isn't real or isn't painful.  The real pain is those who doubt you.  Why would we pretend we are in pain.  Why would we not continue to do what we used to love and fake it?  These are the questions people need to hear, maybe then they will have a small amount of understanding.  WE don't need pity, we don't need attention and this is nothing to fake about.  It IS real and it isn't pleasant.

Keep your head up and your chin higher.  Be proud and don't worry about others.  You know the truth and I am with you.

Sincerely,

Happy in my own skin
Helpful - 0
1060145 tn?1255148009
I totally understand what you are going through. I too have been DX with Lupus, Sjogrens, and Fibro. I suffer with everything just as you do. People and Doctors do not understand what we feel and they do treat us like we are making it all up. I have also been told by many doctors about exercise and I have done physical therapy twice and it has not helped. When I do anything more than 2-3 hours a day ie...shopping,lunch,visiting friends,PT, even going to the doctor's office I am in more pain and exhausted. I have lived with this disease for a year already and nothing has helped. If I over do it than I really pay for it and it takes me a whole week to recoup and feel half way decent again. All I want is my normal life back as I use to be able to function. I know thats not possible and I have adjusted my life but I get so tired of being treated by physicans that truley don't have compassion to my symptoms just because they can't see my symptoms or my blood work doesn't indicate it at the time. Do doctors truley think I would choose to live like this and go in debt with thier fees. I have better things I'd like to be doing and buying than visiting them and paying their fee's.
So I do understand everything you have said. I feel your fustration as I live with it too.
Helpful - 0
Avatar universal
Hi Barb,
A friend of mine was just diagnosed with Sjögren’s syndrome and I'm wondering what the best web sites or where you can find the best information on this. Do you have any good information? Do you know if there are any other illnesses that go along with this. She thinks she may have other issues as well.
thanks
erica
Helpful - 0
Avatar universal
There are many ignorant people out there that don't understand a thing about either one of your conditions. Regretfully, this even includes some in the medical field. Look, you know you aren't imagining all these symptoms, so don't let anyone make you feel like a second-class citizen. If your boss needs to be educated then I would suggest searching for some good, well researched articles and present them to him.

Barb, it sounds like your job may be too demanding and stressful for someone with both fibro and Sjorgens. There may come a day when you may have to look for a less-challenging job with shorter hours. I'm not saying it can't be done but it does sound like a heavy load. Sometimes we are forced to evaluate our life styles and make a few necessary changes. I recognize this isn't the best time with the job market the way it is, but sometimes a few changes can help us deal better with our health issues. It may be something to think about in the future.

Believe in yourself. Don't allow anyone to make you doubt yourself. You have enough to deal with just trying to survive with both these conditions. Do not allow anyone to upset you, you need what little energy you have to apply to yourself and your job. Focus on what is important to you, and if I were you, I would probably not get into explanations with anyone that didn't need to know. I wish you all the best.
Helpful - 0
Avatar universal
Exercise is a good way to help manage pain. I do believe that supervision, perhaps with a physcial therapist, is a good way to approach or begin. It is OK to be a little sore, but if it increases your pain then yes, you probably did too much. It is very necessary to stretch (properly) muscles before and after. Ice or heat may be helpful afterwards if you are experiencing a problem area. I use moist heat prior to exercise also if I am having pain in a particular area. When I say physcial therapist, I mean someone either familiar with FMS or someone using a very conservative approach. Stay away from sports medicine as they treat too aggressively and can hurt you.

Basically, we need to increase the amount of exercise very gradually. This can take a while, especially if you don't normally exercise. Fibro can also decondition your muscles very quickly so you do need to stick with it. It requires patience, but in time you will see an increase in stamina and it may even help with the brain fog. Learn to listen to your body.

There are also strengthening exercises, something to consider. You can work them in with your daily stretching exercises. Yes, these things require some time and dedication but many fibro sufferers (not all) can benefit from exercise. I think it is well worth the time.
Helpful - 0
Avatar universal
Actually, one of the recommended treatments for either Fibro or CFS *is* exercise.  But what we as patients think of as exercise differs radically from what any healthy person thinks of as exercise, or what we thought of as exercise before we got sick.

If the exercise you did put you in bed for a week, then you probably did WAY more than you should have.  Try doing about 3/4 of what you think you could without causing any side-effects, even if that's as little as a minute of walking or whatever it might be for you.  If you can force yourself to do that regularly, most patients find that eventually, their stamina will increase, and often some other symptoms will be mildly alleviated as well.

For myself, I started with 15 minutes of walking being an absolute maximum that would exhaust me for a day or longer.  Now, I can do 15 minutes reliably every day, 20 minutes most days, and on a good day, can do 25 minutes with a 1- or 2-hour rest afterwards.  It took me about a year to get there.
Helpful - 0
747493 tn?1249589956
It's too bad we live in a society where illness (mental or physical) has such stigmas attached.  My husband has been struggling to deal with my multiple illnesses and I asked him one day if he would feel different if I told him I had cancer.  His answer was yes.  I feel that these stigmas come from lack of education.  If people were only aware of what we had to go through everyday they may feel a little bit more sympathetic.  
Next week I have an appointment to talk to disability about my issues.  I had to quit my job as a health care aide because I could not perform my duties and the stress was making my symptoms worse.  When disability called to ask about my situation the women asked me if my doctor had to told me that the treatment for Fibromyalgia was exercise.  I was shocked.  Last time I exercised I ended up on bed for a week.  I'm hoping and praying that my appointment will be with a doctor who understands these issues and doesn't try to make me feel like I'm just being "lazy".  I was hugely active before and I would LOVE to be back in that position but I'm not and this is what I have to deal with.  Anyway, I digress, I believe education is key and if people don't understand it's because of their own ignorance.
Helpful - 0
Avatar universal
  Fibro has no definite test to prove it exists.  Therefore, people do not believe it exists unless they hit that proverbial brick wall.  The other are right.  Most people have a hard time with empathy.  

  However, Sjorgen's is able to be diagnosed with biopsy.  Even blood work can detect it you are lucky?!  People in the office may need to be educated on it.  It is a shame that you may have to focus on that diagnosis to get any credible help at work.

Have you been to http://www.sjogrens.org?  Just on the main page they say "Being a systemic disease, Sjögren’s syndrome can affect all aspects of your life.

Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s also causes serious complications throughout the entire body..."  Maybe you could print somethings out and put on a bullentine board at an employee lounge area.  Autoimmune diseases may be easier for some to accept.  There are so many, almost everyone knows someone that has one.  Hope it helps.  Karen
Helpful - 0
745393 tn?1345077196
people that do not have these conditions do not understand, also when they can't SEE a problem people don't understand.
Helpful - 0
Avatar universal
Sorry, didn't realize this site stripped off angle-bracketed text (or at least doesn't interpret it properly).  That was supposed to be "if you just {do whatever worked for them}!"
Helpful - 0
Avatar universal
Another reason why people think it's a joke or that you're faking is that people can only relate to what they know...or at least they tend to.  And until they get something like Fibro, CFS, Sjorgen's or some other wide-ranging disease, they think they know what fatigue is, what pain is, etc.  To them, it's something that you feel from time to time and that you push past or ignore.  They simply have no idea what it takes for us to get through even the simplest of daily activities.  Heck, I've even seen that attitude WITHIN the Fibro/CFS community by those who are less affected than others.

And "obviously" if you're fatigued by something as simple as a 10-minute walk, or you complain about constant pain that nobody can find any cause for, you MUST be faking it...or maybe if they're really sympathetic, they'll tell you (as your cousin did) that you just need a vacation, or even how challenging it can be to get in shape and lose weight!

And yet, if you told them that you had a migraine, or that you were recovering from cancer, both of which are common (or at least people know someone who knows someone), widely understood, and clearly diagnosable, they would be much more sympathetic.  But "everyone's tired all the time...you just push past it.  Really, you can do it if you just !"

Even doctors will often tell you things like that.  I tried to tell my Neurologist of my sleeping difficulties and they were dismissed with "everyone gets that".  Bloody hell!  If it were what everyone gets from time to time, I wouldn't be bringing it up!
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Avatar universal
People joke about what they do not understand.  Isn't that the way it always seems to go?  Fibromites got really bad press a few months ago when the very doctor who 'discovered' the illness, turned his back and said that it was psychological.  This was printed in the NY Times.  This didn't help us one single bit.

Your boss/superior has no business discussing your medical health with any other employee.  It is against the law so maybe he needs a friendly reminder about that.

Does your company hold any type of health classes for their employees?  You could talk with your Human Resources and ask them to have someone come to speak about fibromyalgia (and make them aware of what you've heard that your superior has said).  Also, if you look at the Health Pages on the right hand side of the board, there is a link for research that was done proving that our brains function differently to pain than 'normal people' who do not have fibro.  You could print that out and show it to those who you feel comfortable with.  

I feel for you having to go through this.  It shouldn't happen, but it does.  It will be a whole different matter when the illness strikes home for them.

Take care and God bless.
Helpful - 0
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