Lady Gaga and I suffer from the same chronic illness

Lady Gaga confirmed yesterday that she, too, battles Fibromyalgia. Netflix is releasing a documentary of her story “Gaga: Five Foot Two,” which will be available on September 22. Yes, someone can dance, sing and perform as great as Lady Gaga does while suffering from unrelenting chronic pain and exhaustion. After all, contrary to popular belief, chronic pain sufferers are some of the best performers on the planet!

No one argues that there is a negative stigma and often times painful comments that come in response to people who say “I’m in constant pain.”

“Oh get over it”

“I know what you mean, I had so much pain when (insert any type of physical accident here) happened”

“Have you tried (whatever the latest pyramid selling product is trending)?”

“You just need to exercise more.”

“You sleep too much/eat too much/party too much that’s why you are in pain all the time”

If you lost that extra 50/40/30/20/10 lbs I’m sure you’d feel a lot better.”

The worst response of all comes from a doctor who may look at you and say:

“Fibro what? I don’t believe in Fibromyalgia.”

Yes, those doctors do exist. I’ve encountered a few of them over the years.

Often times most heartbreaking responses to someone admitting to being in chronic pain are the ones that are unspoken, or spoken behind the sufferer’s back.

“She just wants attention, you should have seen her having no problem with pain when I saw her at the company cookout.”

“Of course he’s in pain, have you seen who he’s married to?”

“My aunt/sister/friend complains all the time about her FI-BRO. It’s all in her head.”

“ Another SEEKER!”

Admitting to being in chronic pain feels like admitting to failure. Personally, it took me years of dealing with chronic pain and trying to treat it with OMT, massage, and yoga before a flare was bad enough that I agreed with my Primary Care Provider that it was time for me to see a Rheumatologist. A Rheumatologist does various blood tests, x rays and pressure point tests prior to diagnosing someone with Fibromyalgia. Those pressure points bring about pain that even the worst chronic pain sufferers had no idea was there until they are pressed on!

People outside my immediate family and closest friends didn’t see my pain for many years. They saw that I was tired. They experienced me being overly emotional about things. They learned to expect that I’d cancel plans on a regular basis. At the time of my diagnosis, I worked extremely hard all day driving from one end of Maine to the other as a pharmaceutical rep. Then, at the end of the day, I could barely walk. My family kidded that they were going to get me one of the chairs that went up the very steep stairs in my cape because I could barely get myself up the stairs at night. In the morning, it was just as a much of a challenge getting back down them. This pain involving navigating the stairs was a huge part of my decision to downsize to a ranch.

A few years ago, when preparing to sell my home, I decided that throwing a toilet from one location to another was a great staging idea. (In Maine, as I’m sure happens in other places, neighbors sometimes dump their dump receptacles where they can’t see them…or plant flowers in them and display for all to see). I needed to move the tossed crapper out of site. No, it was not my throne. When I threw the john, I had no idea what the porcelain God could do to one’s hand and ended up severely cutting my thumb. Bleeding profusely and living 15 minutes from the closest walk in care, and at least 10 minutes to the volunteer fire department in my town, I drove myself to the walk in care because I knew I’d pass out before either an ambulance or friend could get to my home to drive me (us spoonies are tough as nails). I looked like I had cut my arm off by the amount of blood all over me when I walked into the walk in! They had to put multiple stitches across my thumb knuckle. The bleeding was so profuse they talked about using a tourniquet. Once I was sewn up, I was told to go see my primary care provider in about 10 days to get the stitches removed. I was also told “Do not bend your thumb because you don’t want to pop those stitches.”

The pain I experienced in the hours and days following that accident was unrelenting. I found myself saying, for the first time since I was 4 and my mother died, “I want my Mommy.” I couldn’t sleep. The throbbing was extreme. Did I call my doctor and tell them? Of course not. Having lived with Fibromyalgia for at least 20 years prior, I literally thought that my nerves were just overreacting to the cut. I’d never had stitches from an accident before, and thought I just needed to toughen up.

This is what my thumb looked like after being sutured.

A week after the toilet throwing accident, the cut was healing but I couldn’t move my thumb, at all. It wouldn’t bend, it wouldn’t even twitch. It wouldn’t do anything no matter how hard I tried to will it to. I went back to the same walk in care at 7 am on a Saturday, 8 days post injury, to ask for an x-ray due to the pain and being unable to move it. I was the nurse’s first patient of the day. The conversation went something like this.

Nurse: So what brings you in today?

Me: I cut my thumb a week ago, and got stitches here, but now I can’t move my thumb at all and the pain is still intense.

Nurse: Of course you can’t move it, there are stitches across the knuckle.

Me: I know there are stitches, but it won’t move at all, nothing. And the pain is still so bad. I can barely sleep.

Nurse: Well, why did you come in specifically today over this?

Me: Because I work, and have today off. I didn’t have an x-ray and something is very wrong.

Nurse: Well, if the doctor felt you needed an x-ray, he’d have done an x-ray.

Me: (In tears at this point). Look, I’m not a seeker, I deal with chronic pain every single day. I can get pain meds if I need them, there is something seriously wrong here.

Nurse: Well, I’ll go update the doctor who is on today and see if he wants to do an x-ray.

The doctor on that morning came in and took a look and ordered the x-ray. Upon returning from my x-ray the door was left open to my room and I heard the station outside my door go quiet and the only words I heard were “I didn’t do the exam.” The doctor then returned to my room and said “I’ve put a call in to the hand surgeon. It appears your thumb is broken and he wants to see you first thing Monday morning.” When the Nurse Cratchit returned with a splint that I needed to wear to protect my thumb from further damage she said “Well, that’s a good thing you came in today.” Mic drop.

Never in my life had I experienced as quick a turnaround once a specialist was called. I was brought into the hand specialist’s office as soon as the office opened on Monday and surgery was scheduled for the very next morning. He was concerned that I actually had ruptured a tendon. If you have ever experienced a tendon repair, the repair process is scary and the recovery process even scarier, especially when you are single and have no one to help out. I was given an insane description of what he was going to have to do, including but not limited to anchoring the tendon to where it should be on my thumb via a button sewn onto my nail bed.

Upon opening my thumb up, he found the tendon was fine, but my thumb was dislocated and a piece of bone was broken off and floating. When I woke up in recovery to find my hand wrapped in a much easier way than he told me to expect (and no button attached to my thumb nail), I was literally the happiest person they ever had in recovery. I was also quite notorious for how the injury occurred. I woke up to my recovery nurse saying “So, I need to hear how you did this with a toilet?”

This was the “Zoro scar” left after my surgery to repair the damage,11 days after the injury.

When one of my best friends asked why I hadn’t gone back to the doctor sooner with the pain I was in, my response was quite simple. I told her that with fibromyalgia, I’ve lived with chronic pain caused by overactive nerves for so long, that it’s hard to distinguish that type of pain from broken bone and dislocation pain because they both hurt just as bad. She was shocked. Yes, fibromyalgia pain is that severe.

So what do fibro patients do? We get by the best we can. We make believe we are ok. We work for as long as we possibly can because the prospect of applying for disability and being without insurance is just too overwhelming. We rest a lot. We avoid situations that are going to cause pain. When the pain gets the best of us, it’s our loved ones who see the pain and wipe away our tears. And yet, each and every day, we get up, put on our costumes, paint on our happy faces, and do our best possible performance. Just like Lady Gaga.

 

Lady Gaga’s reveal this week makes her 2017 Superbowl performance even more amazing than it already was! The Netflix documentary is actually going to show her behind the scenes preparing for this halftime show.

Dawn DeBois

About Dawn DeBois

Florida born and Maine grown, my life has been atypical. Suffering a very early loss of my young mother when I was 4, I started the path less traveled. From being orphaned and then raised by a foster family, to having major back surgery at the age of 13, the emotional and physical stress load was extreme. Those early childhood years, that were supposed to be carefree, were full of loss and severe physical pain. Both emotional and physical stress during childhood have been found to contribute to autoimmune disease. My first autoimmune diagnosis was at the age of 28, which has led to juggling multiple autoimmune diseases (Hashimoto’s, Fibromyalgia, Ankylosing Spondylitis, Psoriatic Arthritis and most recently LEMS- Lambert Eaton Myasthenic Syndrome). I am officially now classified as having “Multiple Autoimmune Syndrome.” You know what they say, go big or go home!