Today is May 10th and that means it is fibromyalgia awareness day. Fibromyalgia is an chronic illness that has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety.

After my traumatic event when I was 13, my fibromyalgia was triggered. It started out in my ribs and I remember being really scared because I thought something was really wrong with me. It hurt to lay down, to be touched, to move. I cried myself to sleep a lot during the first onset of my illness. I continued to get more aches and pains. For instance, my joints starting hurting badly, and my back was always hurting.

I went to the doctor almost every other week. I was also constantly getting sick and my lymph nodes were always swollen. fibromyalgia is also linked to many other illnesses such pelvic floor dysfunction, chronic fatigue syndrome, ect. I have pelvic floor dysfunction and CFS. fibromyalgia also is connected to heart problems. My heart rate is almost always in the 100's when I’m resting. Sometimes it will just pound and I can hear it in my ears while trying to rest. I loose my breath and it becomes hard to walk. All these problems are invisible. Fibromyalgia is invisible.

I remember being in pain all the time when I was 13 and then one day my mother touched my leg and I told her that it hurt me. She then told me that my grandmother had fibromyalgia and I should look it up. So I did, and what I found was every single symptom that I read about, I had. At the time I was only thirteen and none of the doctors I went to took me seriously, by the time I was actually diagnosed I had been to multiple doctors, been told to my face that they didn’t know what was wrong, been told I needed to see a therapist, I was just depressed, I was just tired, it was just growing pains. I didn’t have a support system and my own mother told me that it was in my head, and started to make fun of me for it.

I use to lay on the floor because I couldn’t get up because of my heart beating too fast. Getting out of bed hurt my feet, which I didn’t know wasn’t normal until years later. Being touched was painful, which I thought was normal. I thought being in pain was normal. I don’t remember what it is like to not be in pain. It’s a constant battle every day.

When I was 14 I was almost certain I had fibromyalgia, and by the time I reached college I had done multiple research studies and papers on fibromyalgia. I knew more about it then my doctors did.

By the time I was 18 I had lost all my friends due to my pain, I wasn’t able to go out anymore, go to parties, drink, do anything. I was forced to be boring, and the friends I grew up with were wild and crazy and drank every weekend and I couldn’t do it. I ended up really alone till I met a boy that I started dating.

When I was 19 years old I decided that I had enough of the pain. I would come home from work in tears. My boyfriend could never touch me, my friends could never hug me, my skin would hurt, my muscles, my bones, my face, it would hurt to sit, lay, sleep, everything. It was effecting my quality of life and I didn’t really want to live anymore.

So I went to the doctor with my mother for support. The doctor told me that I was just depressed and needed to see a therapist and that if I didn’t get help I would end up using hard drugs to feel better. She told me that I was too young to have fibromyalgia and that no one in the office I was in would diagnose me, and she wouldn’t give me a referral to a rheumatologist.

I went home that day and I cried and cried. How unfair it is to be young and be in so much pain and to have no one listen to you or believe you. So I went to take matters into my own hands and I started looking for my own way to get into a rheumatologist. But about a month after that last visit some how I sprained my ankle. No idea how I did it, it blew up into a purple balloon and because I am dumb and I am use to pain, I worked 40 hours on it for two weeks. Messing up my sciatica nerve, which is still (3 years later) not back to normal. I was sent home from my work and told I couldn’t come back with out a note. So I went back to that doctor, and for some reason she referred me to a rheumatologist. 6 years after the onset of my pain.

When I got to the rheumatologist, she did a few tests and checked me out and with in 30 mins she told my mother and I:

“You have text book definition of fibromyalgia”

I had just turned 19 and my boyfriend at the time had just got diagnosed with stage three testicular cancer. The stress was on and the pressure was hard. My new rheumatologist put me on a drug called Cymbalta. It was a miracle drug for quite some time. My pain went from a 10 to a 5, and I was able to work full-time and not come home in tears anymore. I had more energy, I was happy, and the pain was almost gone.

Like I said earlier my boyfriend had cancer so while I was just newly diagnosed officially, it wasn’t really new to me and I was able to put away my own pain and grin and bear it and put all my energy into helping my boyfriend, stay alive.

I thought that I was getting better and everything was better, but after my boyfriend was cancer free (almost a year later) Cymbalta stopped working, and the pain became bad again. I couldn’t stop taking cymbalta because it’s an type of pill that you take and your body becomes addicted to it, stopping it cold turkey would put me in the hospital. (I have accidentally missed doses of cymbalta and the withdrawals of not having it for longer than 24 hours was miserable) *I did finally manage to get off it, and it was very hard*

Eventually I had to go onto work disability, and I was out of work for three months. These days I could barely walk. When I wasn’t working, I was in school and I was doing well because its all I had to do. School and go home. But after three months was up, I was still in pain, I wasn’t better at all. I did start aquatic physical therapy, but it didn’t work and I would come home feeling like a board from how stiff I was from it. (This was the third time I’ve tried physical therapy for fibromyalgia too) I was also trying acupuncture, but that didn’t work either for pain, but it did help my restless leg syndrome.

So when I started work again I was still in school. I came back to work and I was a horrible employee. The pain was too great that I could barely work anymore. My job was to cut fruit in a cold room for 8 hours a day at whole foods. Not very good on the joints/muscles. After a few months of being full time again, I had to ask to be part time. I lost 20 hours a week. Resulting to me loosing 6,000 dollars a year. I went from being the best employee, to the absolute worst because of fibromyalgia.

While I was in school I was doing well till I had to go back to work. Then the work load became too much, school was too much, kennels were too much. I couldn’t do it and I was missing too many classes and my teachers didn’t understand and wouldn’t help me, and no one would work with me and the school I go to didn’t tell me anything about disability rights. So I thought I had no choice/help. I ended up dropping out of my dream school for 6 months.

After I dropped out, about 2 months later, I was fired and somewhere in this time line, my boyfriend broke up with me.

Everything was horrible and I was in pain. Emotional and physical. So I needed to do something about this, because it wasn’t working. Things needed to change. I needed pain medicine, which I was denied from other doctors because ‘ohh you’ll become addicted, you don’t really need it, pain medicine doesn’t help fibromyalgia” Bullfuckingshit.

Lucky for me I stumbled across a great doctor who believed me and has been treating me fantastic and I ended up getting on pain medication that has made my life 50% better. I am back in school, still looking for a job, but that’s okay.

Fibromyalgia took my teenage years, took my friendships away, took my job away, almost took my dream school and career away, ruined my relationships, beaten me down to the core, broke me and has thrown me into walls. It is a horrible monster that is in a nightmare that you try to wake up from, but its a constant nightmare for me and no matter how many times I wake up, it’s still there. This is not something I would wish on anyone. Even recently I have had a friend say to me “why can’t you hang out with me ever, but hang out with ‘so-and-so’” People who aren’t chronically ill don’t understand and they will never understand. Thats why we need awareness and education for other people. I have to help people learn about it, I have to make them believe and understand.

Some days are too hard to get out of bed, my heart is still bad, my bones and joints are still bad, my body aches and when I flare up I should be hospitalized, but I am stronger than most and I handle my pain with a smile and I never let people see it.

If you have a love one who has fibromyalgia, or a friend.. Never be angry at them when they can’t do things, when they cancel plans, when they don’t see you, when they are resting, or they can’t work or go to school. Living with a chronic illness is a bad joke from the world. We have to deal with our own pain and guilt and self hatred on our own, please don’t add to it by being an asshole.