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07/08/2008 04:54 PM

How to tell people

hurtallover
hurtallover  
Posts: 283
Member

I haven't told may people about my fibro diagnosis. My husband, in-laws, and one person that I work with. I haven't told anyone in my family yet. My husband and in-laws aren't very supportive. I am unsure how to go about telling my family and co-workers. I think maybe I should tell them only when necessary? But when I am having a bad day I really don't want to deal with questions ect. Maybe someone has a good suggestion on how/what to say. Thanks
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07/08/2008 05:18 PM
Auntie3285
Auntie3285  
Posts: 9182
VIP Member
I'm an Advocate

Hi Hurtallover ....

I am in somewhat the same position that you are with telling people I ve been diagnosed with Fibro.

Some are sympathetic but it s obvious they hardly know what I am talking about OR they just act like it s a self imposed disease like hypochondria.

My husband is not sympathetic at all . I guess he thinks it is something that can be cured or operated on and problem removed (like having gall bladder removed or hysterectomy etc.).

I think I will only tell people when I m having a bad day . Maybe they will be more understanding as to why I m not feeling well ...

Sorry I didn t directly answer your question but maybe someone else will be able to.


07/08/2008 05:35 PM
tsage
tsage  
Posts: 708
Member

I tell everyone outside of work without hesitation and with strong conviction. Fibro is a real condition for which the FDA has approved treatments. I believe we should tell people we have fibro like we would tell someone we have arthritis. We need to rise above the controversy to educate people, and if they look upon us with skepticism we should smile at them as if they're missing something and tell them they'll understand some day.

Work is a different story. I think it depends on how long you've worked for a particular employer and the level of rapport you have with your supervisor. For instance, I told my previous boss about my condition right away, as I had a good relationship with him and had worked there for several years. However, I started a part-time job in May and will NOT discuss my health issues with anyone at work. I wouldn't want my co-workers or my boss to wonder whether or not I'm going to "make it".

I created an FM Pocket Reference Card and saved it on my website if you would like to print some for your family members. Go to http://www.photosforfibromyalgia.com/ and click on 'Resources' on the left to find the file.

I hope my feedback helps you in some way.


07/08/2008 06:39 PM
hurtallover
hurtallover  
Posts: 283
Member

Thanks for your responses. I am still not sure what to do--you both have great points. As far as work, I have worked at my current school for 2 years. I will start my third in August. My husband is the Superintendent--so he is my boss. I know how he feels already. The rest of my co-workers, who knows, probably depends on the day. Most are nice to your face, and then the minute they get the chance they are talking about you behind your back. Esp. if they feel that you are not pulling your weight. In this case it doesn't help that my husband is the boss, they feel that I get things that they don't--they have never told this to my face, but you hear things. Oh well--what to do?

07/08/2008 07:22 PM
tdecker68
tdecker68  
Posts: 242
Member

I have a difficult time telling people outside my home that I have fibro. I always think they will judge me wrongly. I did tell 2 people at work the other day and what I said was " I know that everyone thinks this is in people's heads and it is not accepted by most of the medical communuity bu I have Fibromyalgia". I felt like such a fool....

07/12/2008 08:39 AM
tsage
tsage  
Posts: 708
Member

You shouldn't feel like a fool. Tell people without an explanation about the controversy. Most people I have told don't question the condition, and in fact they often know a family member or friend who has fibro.

07/12/2008 09:09 AM
sillyitiliangrl
sillyitiliangrl  
Posts: 2
Member

Hi everyone, this is my first post here (of many I hope!)

This is one of the questions I have had since my dx... yesterday!

It explaines so much that I have, until now, not really understood. I note at work that I have functional weeks followed by weeks where I cannot do ANYTHING... I've been thinking of telling my boss, or not telling him... is it just making an excuse? Am I really not capable of doing my job if I can only do it "most of the time" instead of "all of the time"?? I have so many questions right now, my head is spinning! I guess I'll just start here Smile


07/12/2008 09:34 AM
Neigalomeatiga
Neigalomeatiga  
Posts: 18
Member

As far as telling your boss, you may want to, as he cannot take action against you for a diagnosed medical disorder. That would be illegal (in all kinds of ways). I have always told bosses (after being hired) simply because there are days when I have had to work on medication and I don't ever want any resulting behaviors to be misconstrued.

As for telling friends and family, it can be very frustrating to try and make them understand *exactly* how you feel. Here's what I do (and sadly, I didn't make this up), and it works really well:

I hand the person I'm talking to a fistful of spoons. Like 10-15. Then I ask them to describe their day for me. Each time they do something that requires physical and/or mental exertion, I take away a spoon. They're horrified by how quickly their spoons disappear and how many have to be spent on necessities (like making dinner or driving to work). When they're sitting across from me, empty handed, I tell them that now they have no option but to go to sleep. Most of them can't even make it through half a day's worth of activities on the spoons they have. It isn't a perfect analogy, but it helps them understand how difficult even getting the laundry done can be for me on some days.

I hope this helps!

((hugs))

Nei


07/12/2008 09:50 AM
mcbeth
mcbeth  
Posts: 1559
Senior Member

Welcome to the group sillyitiliangrl

I haven't told my boss. I have't told him because he is one of those guys that says "Oh my wife has that" then I get the list of everything that she does.

I'm just not ready to hear that.


07/12/2008 10:34 AM
cinnamon
cinnamon  
Posts: 144
Member

Hi Everyone, I havent worked scince 2005, I had to stop because of the type of work I was doing, Just before I left I didnt even have the energy to get out of bed let alone go to a job. I have been on SSI for a year but had to show them that I could not work and they were not going to force me back by denieing me. I didnt get denied . I tell everyone, I dont care who it is, One time we were at some friends house and Jack came up behind me and grabbed me behind my neck, I went thru the roof, and my husband said oh Jack, she has Fibro and is in so much pain all the time, He was so sorry I couldnt be mad, he dosent do that anymore, he gives me avery soft hug when he sees me. You need to let people know right away so they dont do this to you. Cinn
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