Sharing Your Fibromyalgia Diagnosis

Sharing your Fibromyalgia Diagnosis

Sharing your Fibromyalgia Diagnosis with Friends and Family

The fact that you have a diagnosis is balm to your ears, but when the diagnosis is Fibromyalgia, not so much for the ears of your family and friends, who perhaps have been hearing complaints for a long time now.

There could be many reasons for this disdain of the disease.

1) Folks simply do not know much about it.

2) Their doctor does not believe in it (which is all too often the case for those doctors who simply have not taken the time to learn about it)

3) Some doctors tell any patient who has something they cannot discern that they have Fibromyalgia. (This gives all of us a bad rep)

Something has to be done about this and quickly. Is your family into reading?

Mine either. Not back when I was first diagnosed in 1985. Most of my family were ambivalent and put the information I gave them away to read later. They were not happy when I printed out four page reports and handed them so they could understand the disease. What was I thinking?

I thought it was a clever idea. Not. It was like being in a weird religion and trying to convert a non-believer; same effect.

I will say that no one talked about my complaints or weirdness to my face; it was all done behind my back. I thank them for that.

At work, when I was diagnosed I had a young whipper-snapper tell me that Fibromyalgia was nothing but muscles and I was being a baby about pain. Greg, if you’re reading this, who’s laughing now?

I understand now why he reacted as he did. But at the time my feelings were hurt and I began to wonder if the doctors who said I had a “stress” problem were right and I just needed “happy” pills.

I thought about writing out the entire list of just my symptoms but there simply was not enough room on a 3 x 5.

Believe it or not, there are people who do not have computers in their homes. (No computers = no Googling!) These are the people who might not know much if anything about Fibromyalgia.

I changed my tactics when I knew folks were going to ask. When I was out in the work force and someone asked me about Fibromyalgia who truly does not know about it, I handed them an index card (small one folks) which simply says:

Have you ever had a headache so bad that you were sure someone hit you with a rock or there was a rotor-rooter inside your head?

Have you had your legs refuse to move when you tell them to, or found you must run to a neighbor to ask them to open a jar for you, because with all your might you tried and failed?

I feel this way every day.

I have Fibromyalgia

Another card idea is

Fibromyalgia involves inflammation like pain in the muscles, tendons, ligaments and sometimes the connective tissue in your body. The body is not really inflamed, but it acts like it is.

I have Fibromyalgia and although I am smiling, I am still hurting.

Thank you for your consideration.

If you didn’t have their consideration before - perhaps you will now!

Of course if you have Fibromyalgia you will want to customize the index card to your own symptoms as well as for a variety of people; those in the grocery store who ask you why such a healthy looking person as yourself is using the handicapped wheel cart; those in elevators who just give you funny looks on a day you are not communicating too well; even in the loo! Imagine what you could put on that card?

Seriously, as far as family and friends go, don't worry about whether they understand or not.  You are the one with Fibromyalgia.  Eventually they will come around.  When they start asking serious questions about what you are going through - then they are in receptive mode. 

I still recommend the 3 x 5. 

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Comments 13 comments

tlpoague profile image

tlpoague 5 years ago from USA

Welcome to HubPages. Great tips, too. My husband was diagnosed with Fibromyalgia a couple of years ago. I agree that it is hard to get people to understand what it is and how to deal with it. Thanks for taking the time to share your experiences.


Pixienot profile image

Pixienot 5 years ago from Clarksville, Indiana Author

Since fewer men experience Fibromyalgia than women it is much harder for them I believe.

Remind him to follow his gut feelings about his activities, unless a professional is treating him and giving him advice. Then... give it a try. It won't always work, but he will find a system that works for him. It took me almost 20 years to find a system.

I wish you both well in this adventure. We fibromites have our downs, but we also have lots of ups!

Thank you for your comment.


Jillian Barclay profile image

Jillian Barclay 5 years ago from California, USA

Thank you as always, Pixienot! Please keep speaking out! The more that people know and read, the less judgmental and intolerant they should become. It is so sad that when we are diagnosed that we are almost shamed by the diagnosis. Somehow, we have to change that! Granted, our bodies may not be working the way they should, but we are still more vital than most because we still have our brains (minus the fog that we sometimes experience)and our will to find a way to get better.


b. Malin profile image

b. Malin 5 years ago

Your Hubs are always such a good read...you have a way of telling your story, with wit and charm, which is so important in getting your message across...you are doing an excellent job!


Pixienot profile image

Pixienot 5 years ago from Clarksville, Indiana Author

Thank you very much. I inherited it from my daughter. Queen of Wit! It's amazing what we learn from our chidren.

You should read her hubs: SueRoy333 You will laugh your head off at most of them.

Thank for the nice comment and encouragement. It is really appreciated.


Dolores Monet profile image

Dolores Monet 5 years ago from East Coast, United States

Pixie - I think a lot of people are dismissive if they have never heard of something. Fibromyalgia is no joke - my mother had it and it was terrible. Good luck and God Bless!


Pixienot 5 years ago

Thank you so much. Validation is fundamental to the art of "living with" Fibromyalgia.

Thank you for your kind words. The more that I think about my hubs, which is a great outlet for me; sharing them is a bonus!


Just Ask Susan profile image

Just Ask Susan 5 years ago from Ontario, Canada

Good info I now know what Fibromyalgia is. Sue Roy is your daughter wow I love reading her hubs she makes me smile and laugh like crazy! I really like the way in which you tell a story and I am going to go and read more now.


Pixienot profile image

Pixienot 5 years ago from Clarksville, Indiana Author

Thank you. Yep, Susan is my daughter and I am so very proud of her. She is not only a great writer, she is one awesome human being. I love her stuff, too! ;)


Beth Luiggi 5 years ago

awe:) Im not a writer.. but thanks for the pic mom ! I love you. I know you are in a lot of pain. I just do not like to talk about it because there is nothing I can do. Your other kids love u and understand too. *muah*


Pixienot profile image

Pixienot 5 years ago from Clarksville, Indiana Author

Hey Boo, thank you for reading and responding to my hub.

I know you all love me and I know sometimes you feel helpless when it comes to me. However, let me remind all of you that a phone call, an email, something small makes me feel wonderful! Maybe not totally healthy, but certainly on the road!

I love you so much. Thank you!


Lowin 4 years ago

Hi. This is my first time to comment. I have never owened a computer before. I have one now because of the fibro. just so I can find people like you. Thank you for being here for people like us. I am just starting this new journey in my life. God bless you.


Pixienot profile image

Pixienot 4 years ago from Clarksville, Indiana Author

Hi Lowin,

I am so sorry for taking so long to respond. I have been working hard to overcome a particularly bad episode of fibro. I'm winning!

Feel free to email me and I'll help you any way I can.

There are lots of articles re: fibro (mine included) on here.

The most important thing you want and need to keep in the forefront of your mind is that FIBROMYALGIA WILL NOT KILL YOU!!! There are times when you might wish it would, but that is the depression talking.

Because it will not kill you, you can rise up again. I'm in the process of writing a short article about just this thing.

Hang in there and keep hope!

Pixie

PS: enjoy your computer... find some games and jokes and indulge yourself every day.

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