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.