Michelle Nicole

Michelle Nicole

 Friends, this is our lovely daughter, Michelle Nicole (AKA Belle). Isn’t she beautiful? This photograph was taken on the runway in Phoenix, AZ during a popular jewelry company’s fall frenzy fashion show where Belle and several other women modeled their new collection.

Unfortunately, I was unable to attend this gala, but Belle told me she was having the time of her life and never felt more beautiful. I think that’s plain to see from the photo, but there’s a lot you don’t see!

What would you say if I told you that during this event, Belle was in the throes of one of the worst Fibromyalgia flares of her life causing incredible fatigue, unrelenting pain throughout her entire body and instability in her legs? Perhaps you are thinking:

Fibromyalgia? Isn’t that what old women get?

How can she be in pain, look at that smile! If she’s in that much pain she should be in bed.

She doesn’t look tired or sick.

Maybe she should drink more water. She does live in Arizona, dehydration makes you tired and weak feeling.

Does she work out? She probably needs more exercise; that gives you energy!

I bet she is anemic. Women get anemia because of, well YOU know. Has she had blood work done?

These are just of few of the well meaning, yet hurtful and utterly offensive comments people suffering from invisible diseases hear every day of their lives. Invisible Illnesses are those that are not obvious or immediately apparent. Most sufferers do not use assistive devices and look perfectly healthy. Of the 47 noted Invisible Illnesses causing disability, you may be most familiar with these: Fibromyalgia, Chronic Pain, ME/CFS, RA, Lupus, MS and Cystic Fibrosis.

Belle called me from the waiting room of a new doctor’s office two days after her modeling experience. She was in tears from pain and frustration, “Mama! I have to go to work when I am finished with my appointment. I look adorable; I don’t think they are going to believe that I hurt as badly as I do. I SO want to feel better, but I don’t know what else they can offer me.”

This is always a concern when for those with chronic illnesses; Will people think I am faking? Personally, I have been questioned about having a drug addiction; my choice of doctors and accused of playing it up for disability or attention (you pick). As such, I choose NOT to disclose information that is very personal about my health to but a few very close friends who know me so well, they can instantly tell if I am having a bad day and call me out if I say otherwise. To the rest of the world, I present what I call a smoke and mirrors illusion. I will always appear presentable, even after a surgery and chances are, the better I look the worse I feel.

 I assured Belle that of ALL people, physiatrists and other specialists understand our coping techniques and look deeper than what the world sees. She left the doctor’s office some 2+ hours and a few shots later, exhausted, but feeling validated with options for treatment and possible relief on the horizon.

I think most people who suffer from an Invisible Illness will agree with me when I say; our diagnosis does not define us. We don’t want to be pitied, ridiculed or judged. We want everything a normal person, like you, wants. Do you want to help us help us feel accepted and validated? Please think about how you can speak words of encouragement and support into the lives of your friends and loved ones with invisible illnesses. Check out this video, What NOT to Say to Someone with an Invisible Illness, it may help take you in the right direction!