What Is Fibromyalgia?

 First grade

Twelfth grade

I going to pretend that I'm interviewing myself.

It's a pleasure to speak to you today.

Why thank you!  The pleasure is all mine.

Tell me about fibromyalgia and chronic fatigue syndrome.

As you know, many people have no idea what it is.  Briefly, it's a disease.  It's hereditary.   It's invisible.  There are no easy tests to determine if you have it or not.  There are many tests that have shown that fibromyalgiacs have different things going on in their brain, muscles, spinal column, etc., but there is no cheap, accurate test.

To make matters worse, 80% of people who have it are women.  The medical profession has always been quick to dismiss women's complaints as "all in their heads."  

What do doctors think?

Most doctors today accept that it is a real, and a real disabling disease.  But there are still practicing doctors who send patients to psychiatrists because "it's all in your head." 

What is the average patient like?

Me!  The average patient is a middle aged woman who has endured a trauma to her body.  Typical traumas include:

1. Car Accident

2. Surgery (this was me; I had surgery 6 weeks before the beast attacked)

3.  A very bad case of flu, or mono, or another serious illness

4.  Pregnancy/childbirth

5.  Menopause

A few weeks after the initial trauma, they begin to hurt and it gets worse.

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You said it was hereditary and that you are born with it.  Please explain.

It's all so clear now that I look back. I always needed far more sleep than the average person.  I decided not to be a doctor because I did not think I could stay awake during internship/residency.  

I was always clumsy and terribly uncoordinated.  I was legendary on the kickball field for only being able to kick the ball about 4 feet.  Once, while choosing sides for kickball, I was the last one chosen.  I began bawling.  While I am not in favor of the extreme touchy feeliness of a 2011 classroom, I can tell you that I'm very glad that kids today don't do this.  I think the teacher was as upset as I was.  We never chose sides again.

Jeff, if you were in the 5th grade with me at Gilbert Linkous Elementary School, 1969-1970,  I still hate you.  You loudly wished that I wouldn't get on your team and when I didn't you jumped up and down shouting "hooray!"  

As I grew, I had many health problems that I now know were caused by fibro.   Lots of girl problems that I don't want to get into in great detail.  

The scariest one was the panic disorders that I developed and still have after 20 years.

Studies have shown that fibromyalgia tends to run in families. That's a link to the Mayo Clinic.

Is there any cure?

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Nothing recognized by the AMA.

Is there any treatment?

Nothing that the AMA endorses.

Does that mean that you intend to resign yourself to a life of pain and disability?

No.

What are you doing?

Everything I can think of.

Has anything worked?

Not yet.

Are you willing to talk about what you are doing now?

Well, I'm doing a detox/supplement plan under the supervision of a dear friend who is a healer, and I'm doing rohun and guaifenisen.

Sounds like you're throwing money down the drain. 

Well, what do I do?  I'm not refusing conventional medical treatment. I'm not chewing on bark or dancing around a fire at midnight chanting voodoo rituals.  I am simply thinking outside the box because, my friend, the box is an ugly trap.

So how has this affected you?

It has ruined my life.

Say what?

I am lucky that my husband has stood by me. Many women lose their husband.   My kids have suffered as I can't parent them as well as I'd like, but on the other hand, they have developed independence early.   That's not a bad thing.

I could not do my job and I lost it.  I am on state retirement disability and applying for social security disability.

I miss my job.

Aren't you worried that you're hurting future job prospects by being so open about your disease?

No.

Why not?

I refuse to hide as if I have a shameful problem.  I have enough money to live modestly and permanent health insurance.  Most people don't have these great gifts and are forced to cover it up.  

I believe in being honest.  If I tell a new employer that I have this disease but that I am ready to work and give 150%, I expect them to believe me.

Do you want to talk about your last job?

No.

Why not?

Who will hire a person who discusses their past employers on the internet?   I wouldn't.  It was a wonderful job, I couldn't do it any more the time, and I went out on disability.  I still feel a great fondness for the people I worked with and wish them the best.

I am a professional.  I will behave professionally if I am hired to work for you.  I will never discuss any employer, past, present or future.  The internet is forever.   People are writing things on the internet that they are going to regret in the future.

 

Have employers been understanding towards people with this disease?

I have heard many horror stories.  But employers hire you to deliver.  If you can't deliver, they often retaliate.  They aren't your mom who loves you no matter what.   Like everything else in the world, there are good people and bad people out there.

Would you advise a newly diagnosed person to share their diagnosis with their employer?

In this economy, I would not tell.  Employers are often looking to "cull the herd" and will seize on this as an excuse to fire you.  

Any advice for people with strange, achy muscle pains who are currently employed?

Buy all the disability insurance you can and obtain life insurance and loans before you get a formal diagnosis.

In the context of this disease, what is the best thing that you ever did?

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I was a fanatic, overachieving workaholic who was so dedicated to my job that my husband took paternity leave.  I love to work outside the home and earn money.

I tell every new doctor or disability examiner about my past career.

I am lucky enough to have a gyn and an internist who knew me Before, when I avoided doctors.  They know that I am telling the truth.

Sadly, if I had been a housewife who had never worked, or had left the job market years ago, I would have had a much harder time getting disability.

It isn't fair, so let's just cut to the chase.  Life isn't fair.

When you state your case, you are talking to other overachievers--who share your philosophy about work.   They understand that a person who worked 60 hours a week and loved it doesn't suddenly change into a person who wants to "lie around the house and do nothing," which pretty much sums up the way many employed people feel about people who choose to not work outside of the home.

Of course these days the barrier between going to the office and being at home has blurred so much that some of the highest paying and hard working employed people I know work at home.

Raising children does not seem to count, although caring for young needy children is much harder than the average white collar job.  My kids are now no trouble, really.  Sure you have to become a taxi driver but raising healthy tweens is not that hard.

A caveat:  My kids don't have any serious physical or mental problems. Caring for kids who do is hard at any age.

And I don't do it the way my mom did it.  I don't cook huge meals.  I don't sew.  I don't garden.  My bathtub has moldy grout. I do what I can to keep the place safe and relatively clean but I could work much harder at home and I know people who do.

So, to sum things up, what would you say?

Adoptees, try to find your family history.  Parents of adopted children, pay for the genetic tests if you can.   They will become cheaper eventually.  Do this and be prepared for the future.   Do it under a fake name to protect your privacy and your children's privacy.  But do it!

If I had only known!  I would never have had surgery.  I'd still be working happily.  The tremendous pain I've suffered, both physically and mentally, could have been avoided.

Do you think that you can take this horrible lemon and make lemonade?

That's a terrible question to ask.  It's insulting to every person who has faced illness or death.  Bad things happen.  It's not all for the best.  Life is hard.  

Nobody would choose to get deathly ill, or just wish you could die ill...or have a family member or friend get sick and/or die.  It's rude and insulting to tell them that it's all part of God's plan and all for the best.   Maybe it is.  But that's for them to decide.  Don't tell a sick or grieving person meaningless platitudes.

Don't tell them I know how you feel, because you don't.  When mom dies, I will feel tremendously relieved.  I can't wait for her to die.  (Late stage Alzheimer's).  That probably isn't the way you feel about your mom right now, is it?

I don't know how it feels to lose my spouse or home, but many people with fibro have lost both.

Thank you so much for this interview.

You're welcome.

Any parting wishes?

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Yes.

 

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