When I graduated from college, so long ago I can’t remember, I was all set to be an adult and build my career. I was lucky to get a dream job at a management consulting company. It was ideally suited for me. I was given projects to work on independently in my little office. I got to travel all over the country and even back to my home country of Canada. I spent some of the best years of my life there. I was making good money and having fun. Of course, this was all before chronic migraines and fibromyalgia and arthritis…
I was the breadwinner in the family. I earned more than my husband and we were okay with that. I had no intention of ever giving up working. I just couldn’t see myself staying home with the kids while my husband supported us. That simply wasn’t me. I was going to be one of those Super Moms who had a career and kids. I could handle it; I was good at multitasking. I had the world’s best daycare center taking care of my son. I knew he was in good hands so I focus on my work.
Then I was laid off and found a new job. It wasn’t exactly what I wanted to do but that didn’t keep me from trying to excel because that is just the way I am. Even with a crappy job, I wanted to do the best job I could. But then I got sick. I started missing work. I used the FMLA to get a reduced work schedule because my migraines were so disabling. However, I remained the breadwinner up until I had to quit because of my health. I could no longer manage to work. It was a devastating blow to my ego. Being part of the rat race was a huge chunk of my identity. Without it, I felt lost. Being a mom is great but I wanted, and still want, so much more. I spent so much money and time on getting an education. I didn’t do it so I could stay home babying my fragile health. I was proud of being able to take care of my family financially. Being out on disability was not my dream – let me tell you it sucks.
To combat my identity crises, I started working with nonprofit groups. I took over the local support group for fibromyalgia and chronic fatigue syndrome. I joined Leaders Against Pain (a part of the National Fibromyalgia & Chronic Pain Association). I am becoming an advocate for those too sick to do it on their own. I am giving back to the community in a positive way. But I still miss working. I still miss the joy everyone has on Pay Day. I am still young enough to have hope of jumping back in.
Today is Fibromyalgia Awareness Day. Due to my involvement in the National Fibromyalgia and Chronic Pain Association, I was urged to send a request to my governor – the infamous Chris Christie – requesting he sign a proclamation declaring today Fibromyalgia Awareness Day for the entire state of New Jersey. To my delighted surprise, he signed it.
Fibromyalgia is a disabling illness that affects about 2-5% of the population in the U.S. and around the world. It is a central nervous system disorder that causes sensitivity to pain, central sensitization, chronic fatigue, sleep disturbance, stiffness, cognitive dysfunction, bladder and bowel problems, migraines, and more. Fibromyalgia rarely occurs in a vacuum; the vast majority of patients will eventually develop other health issues – e.g., lupus, POTS, arthritis, spinal problems, EDS, connective tissue disorders, RSD, etc. I consider fibromyalgia to be an opportunistic disorder. It will heighten the symptoms from any and all of the other health problems we have. It will make the pain worse; it will make the brain fog more pronounced. That is why it is important for patients to get all of their health issues under control.
No one chooses to have fibromyalgia. It is not something to aspire to. It irrevocably changes your life. You have to cater to its needs constantly by pacing yourself during normal activities. You have to take more frequent breaks in order to avoid a flare up. Things you once took for granted now have to be planned well in advance. You want to go food shopping? Then you have to avoid all strenuous activity for the entire day. You have to plan it around other people’s schedules so they can go with you because you can no longer lift heavy or awkward items. Some days you will need to use a cane just to be able to walk the aisles in the store. Some days you will have to swallow your pride and use one of the electric carts provided by the store. You will have to endure the stares from other customers as they see a relatively young person who does not appear sick using the electric carts that are usually used by the elderly. Some customers might even come up to you and scold you for it. It is not easy looking healthy on the outside while your body is a mess on the inside. If I wore my illness like a dress for all to see, I am convinced people would look away in disgust.
For all those suffering from Fibromyalgia, this is your day. Awareness is key to managing this illness. We need doctors to understand us and we need the public to not shame us.