You are Your Biggest Advocate. How to get your Doctors to Listen to you.

Flower Flamingos at the Philadelphia Flower Show 2010

Flower Flamingos at the Philadelphia Flower Show 2010

I’m going to the dermatologist tomorrow.  As I’ve mentioned before, I have a wicked case of dermographism (skin writing).  I’m not sure how common it is among Fibro Warriors but I have read that it is another fun symptom.  My doctor, however, does not believe skin aberrations is connected at all.  Which makes me wonder if it might be time to start looking for a new doctor who knows a little bit more about Fibro (but that’s for another day).

So…  Dermographism is in essence your body’s reaction to having too much histamine in your skin.  Having too much histamine in your skin is the issue at hand.  To me, a non-doctor, when I hear the words histamine and reaction I think Allergist.  My doctor thinks dermatologist and won’t send me to an allergist until I see a dermatologist.

Ironically, she referred me to a dermatology group that I went to four years ago when my “rosacea” started.  I started getting patches on my face of what looked like rosacea.  I paid too much money (no insurance) to see a dermatologist because I was concerned about it.  I was told that it was acne (clearly not) and that it wasn’t that bad and I should deal with it.  Sound familiar?  Not gonna lie, it makes me angry to think that if that dermatologist had taken a little more time and listened to me, perhaps she would have put the pieces together.  Needless to say, I’m going to one of her partners.

I find the process of going to doctors frustrating.  Most of them are uneducated on Fibromyalgia and because of it how could they possibly treat it?  How can a dermatologist who doesn’t know that fibromyalgia causes dermographism possibly treat it?  My frustration was pretty evident when I made my appointment.  I tormented the poor girl on the phone.  Our conversation went something like this:

Me: “Hi, do any of your dermatologist specialize in skin reactions cause by Fibromyalgia?”

Phone girl: “um.  I don’t know.  No one’s ever asked me that before.  I just make the appointments.”  Silence

Me:  Light chuckle.   “That’s alright.  I totally understand.  Would you mind asking if any of your doctors specialize in skin reactions cause by Fibromyalgia?”

Phone girl: “ok.  what is it?  micro–

Me: “Fibromyalgia”

Phone girl: “micro–

Me:  “Fibromyalgia.  Let me spell it for you. F-I-B-R-O-M-Y-L-G-I-A”

Phone girl:  “ok.  hold on.”

On hold for over 5 minutes.

Phone girl: “Hi.  You need a rhuematologist.”

Me: “Thanks. I already have one.  Let me explain again.  Fibromyalgia causes skin reactions like rosacea and dermographism.  It’s also called skin writing.  It’s creepy.  I have it.  My doctor wants me to see a dermatologist for my dermographism caused by Fibromyalgia.”

Phone girl: “Ok.  So what’s wrong with you?”

Me: Long inhalation of breath.  “I need to see someone for my dermographism that is caused by Fibromyalgia.  Let me spell it for you.  D-E-R-M-O, the word graph, and ism,  I-S-M.  Do any of your doctors specialize in that?”

She puts me on hold again.

Phone girl: “You can see any of our doctors.”

Me: “But do any of them specialize in it?  Do they even know what Fibromyalgia is?”

Phone girl: “Yes.”

Highly suspect of her Yes, I decide to stop torturing her and torture the doctor instead.

After our phone conversation, I started to feel really bad about my conversation with that poor phone girl.  She’s not a doctor and isn’t expected to know anything about dermographism or Fibromyalgia.  She’s required to answer the phone and be polite (both of which she was).  I then started to feel acutely embarrassed by my behavior.  I try to be especially kind to people and this in my opinion wasn’t even remotely kind.

Then I had a distinct moment of clarity.  I began to think of times when my mother needed a doctor and I was calling for appointments.  I was a lioness.  when handling a family member’s care I am a take charge, fierce, protective animal.  I wanted to ensure they get the best care and best doctors.  So why am I not willing to do it for myself?  If I had been more forceful in the past, maybe I would have been diagnosed earlier.  Instead of accepting there’s nothing wrong with you, I should have challenged it.  When the dermatologist said to me, you should deal with it I should have told her that is an unacceptable answer. You’re the doctor.  Figure it out.

I can tell this is going to be a challenge for me.  Not only because my personality is laid back and being fierce in this way is literally exhausting for me but also because I will feel so bad afterwards and beat myself up.  I know that I am by biggest advocate.  I need to make this my mantra and remind myself.  What would I do if I was doing this for my mother or my child.  This is an inherited disease.  It’s likely my children might have this too.  Deep Breath.

I am my biggest advocate.  I am a lioness.

I am my biggest advocate.  I am a lioness.

I am my biggest advocate.  I am a lioness.

Yours in health,


This entry was posted in Day to Day, doctors, Sound Familiar? and tagged , , , . Bookmark the permalink.

One Response to You are Your Biggest Advocate. How to get your Doctors to Listen to you.

  1. linda kuronyi says:

    You Go Girl. You ARE a lioness. Just make sure you steer clear of Charlie Sheen, i hear he has Tiger Blood. Very much enjoyed the post.

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