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Fibromyalgia: Living with an invisible disease

Updated on November 4, 2013

Fibromyalgia facts

More women than men suffer from Fibromyalgia in the U.S.

An estimated 20 million Americans suffer from Fibromyalgia

Fibromyalgia is said to be the most common arthritic related condition after osteoarthritis

Fibromyalgia is most prominent in women aged 20-50.

The main complaint with Fibromyalgia is pain.

An invisible disease

Fibromyalgia is a chronic disease that causes pain, fatigue and depression. There is no cure for fibromyalgia and treatment is aimed at decreasing the symptoms as they arise. Besides pain, fatigue and depression, fibromyalgia also causes gastrointestinal problems, forgetfulness, forgetting words that are familiar (word search), a decline in vision, seeing spots, shakiness, chest pain, insomnia, severe migraine headaches, chronic yeast infections and many more symptoms too numerous to list.

Fibromyalgia is an invisible disease. While you may be having all these aweful symptoms, especially pain, which is there day and night, they cannot be seen by others. People with fibromyalgia get labeled as "fakers", "lyers", "lazy", and/or "babies" because others cannot see the symptoms that the person with fibromyalgia is feeling. Sometimes the doctors don't even believe that the person with fibromyalgia is having pain.

How do I know this about fibromyalgia? Because I have had fibromyalgia for more than 10 years. Besides fibromyalgia, I also have sciatica, 2 herniated discs (neck and lower back), chronic migraines, bursitis, insomnia, anxiety, asthma, COPD, memory loss, limited vision, spotty vision, chronic pain, degenerative disc disease and osteoporosis. I am on Morphine, Xanax, Cymbalta and Neurontin. I am a mess. But I have a great support system that includes my two children, my parents and my husband. I have lost all my friends because of my disease.

I have been told that I am faking this illness and just don't want to work. I was taken off work (I am a nurse) 5 years ago, by 4 doctors, because the pain and other symptoms had increased so much I could barely do my job (which had been made easier by my boss, who is a doctor with a big heart). My doctor was treating me with narcotics for pain, which made me more "foggy" than usual.

The "fogginess" also interfered with my work as a nurse. A nurse needs to be bright and alert or she/he is considered dangerous at doing her/his job. I also started missing too much work because there were times when the pain was so severe that I couldn't get out of bed in the morning. There were too many times that I couldn't finish my shift because the pain level was too high for me to even walk. Other problems arose that pertained to fibromyalgia that caused me to be taken off work and labeled disabled.

Having fibromyalgia is hard because most people don't even believe in this disease. A lot of doctors also doubt that fibromyalgia exists and they treat you like a pill seaker when you ask for something to help with the pain. Over the years the doctors have studied fibromyalgia and have come to believe it is a real disease, but that doesn't make living with this disease any easier in the "real" world.

I had never been off work before. I have worked in the medical field since I was 17 years old. This was the hardest thing in my life that has happened to me. It has taken me 5 years of being off work to finally realize that this is how my life is going to be...disabled and labeled.

Although my friends had no doubt I was disabled, as they saw my decline almost every day. At first they were very supportive. But, I guess that got old because eventually they started distancing themselves from me. I started to feel like a leper that everyone tried to avoid.

Maybe it was because I was no fun anymore. I couldn't go out because I would have to leave early because of pain...I became a drag. I was always complaining about the pain, maybe crying out for help. But there wasn't much help for me. Eventually my friends stopped including me in activities...not just going out, but everything. I mean, how fun is it to always have to come to my house so that I was close to my bed, heating pad, ice packs and my medication??? right?

Living with an invisible disease is so hard that I don't tell many people anymore that I am disabled. I tell them that I have retired early...that seems to impress them which is a better reaction than telling them I am disabled with fibromyalgia.

Telling people I have fibromyalgia sets me up with looks of questionability. People look me up and down trying to figure out exactly how fibromyalgia is effecting me and why I can't work because of it. They want to know what it really is...and when I tell them they usually act like it's no big deal and I must be a big baby to not be able to handle a little pain.

Living with an invisible disease has caused me great depression. I have actually tried to commit suicide because I could no longer live with others thinking that I was lazy and just wanted to get out of working (I would give anything to be able to work again). That is embarrassing to admit, but I can bet I am not the only one with this horrid disease who has tried to commit suicide.

Living with an invisible disease has left me without anyone (except my husband) to talk to...go out with...or even just talk on the phone. No one wants to be around someone who can't even get out of bed some days and is in constant pain. I can't even go out for long because it is too painful, so I must be a drag to hang out with. I can't sit for long, stand for long or even walk very far.

What a drag on things I am. Living with fibromyalgia has really opened up my eyes to what other people are really like inside. They aren't who I thought they were. My best friend has even distanced herself from me since I have been diagnosed with this awful disease.

Living with an invisible disease is very hard. People don't believe you when you tell them your disabled due to fibromyalgia. They look at me as if I am a horrible person stealing money from the government. They sometimes congratulate me for being able to "play" the system...oh, how little they know. And, oh how it hurts.

If there was a cure for this horrible disease, I would be the first in line to receive it. I have lived with fibromyalgia for over 10 years now. That's 10 years too long for me.

Have any of you had these experiences because of an invisible disease? What has your experience been?

Have you lost your friends because of an invisible disease

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    • freefogging profile imageAUTHOR


      4 years ago from Florida

      When you said "Fibro stole my life", that hit me right between my eyes, because that's exactly how I feel...Fibro stole my life. I just spent a week in bed (not unusual) because of a flair-up. It is is is demeaning...I don't want to live like this anymore, but fibro gives me no other option. Oh, I get an "aura" right before a flair-up...I become very nauseated, and sometimes I even vomit...but I always feel really nauseous just before a fibro-flair. Do you get anything like that???

    • profile image


      4 years ago

      Wow just found this site. I to am a nurse, 25 years into career, when fibro stole my life. I miss nursing so much, had to leave my profession as my health declined so badly. I deal with constant unrelenting pain around the clock. Because this illness is invisable, I suffer in silence. I have a wonderful understanding family whom I have educated about fibro, but I believe there needs to be so much more awareness in the public and medical world. I try to read about research on fibro to keep my hopes up for a cure. I also agree that there seems to be many nurses with fibro. Stay strong, positive and hopeful...thanks for posting, it's my first time posting--

    • freefogging profile imageAUTHOR


      6 years ago from Florida

      Fibromyalgia was put on the list for disabilities that are acceptable to social security 6 years ago, so you shouldn't have trouble getting it. How aweful to lose almost everything right? Bad enough that we lose all of our friends. I copied your email and will write more to you when I get back on here...having a very foggy and painful day today. "hugs"

    • profile image


      6 years ago

      Oh my God

      You are me!! Except the hubby(mine just passed) no kids,asthma,morphine(oxycodone for me) or migraines(thank God)I also take provigil(a blessing for my fibrofog, havent worked 4 years.exhausted my savings, IRA's and yes most of my friends. I know i'm fooling myself and need to file disability but i keep thinking i can work at home( havent found a legitamate one yet) attempted home health thinking, ok 16 years critical care should be doable. Ha!!! What a mess. seems to me thereis alotof nurses with this?I have at least applied for food stamps today.everything is so exhausting.i just wish myfamily understood., they re so used to me being the nurse and caregiver. Gee its no wonder depression comes with this damn thing. Like you, i just want my life back. Or some semblence(sp) there of. Thanks for posting. Not sure if we cant post email but would like to hear from ya? I am crazynurs@ gmail


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