I can tell you first hand, how it feels when family and friends disregard the pain of Fibromyalgia. I was diagnosed with Fibromyalgia 10 years ago, at first it was a relief that after months of pain and tests, someone had a name for what was wrong with me, but when family and friends disregarded my pain the name did not matter so much. No one really believed that I was in pain all the time, that a touch hurt, or that I was sleeping not because I wanted to, but rather I just couldn’t get up and get going.
All I kept hearing from my husband was that “you are getting old”. I was 36 years young at the time, I wasn’t getting old, I was in pain and confused all of the time, and even more confused that not one person understood. Not even my own sisters believed me, that hurt, but hey you can’t choose your family and if they do not believe me that’s OK, God knows the truth.
I shouldn’t say not even one person understood, at the time my five year old son knew that “Mommy” was different, and he started helping, my five year old son gave me more support than anyone. I would fall asleep in the middle of a bedtime story, he started reading to me at night, mostly from memory but it helped him learn how to read, as I hid my tears.
I couldn’t do what I used to do, at least not as quickly, or with as much control, or without pain and fatigue that I desperately tried to hide from my son, but could not. I could also not hide it at work. I had a career I loved, and a caring manager. I was the plant office manager and when I started slowing down, I used to be a great multi-tasker, and getting things mixed up my manager knew something was wrong.
I left work at the request of my manager and went on disability, needless to say I never returned.
Since that time I lost many friends, we would make plans and if I woke up that morning and was having problems even putting on my clothes and make up, I would cancel. Many friends didn’t understand, they thought because I looked OK, I must be OK. After a few cancelled plans, they would stop calling. That hurt almost as much as the pain did, why didn’t they understand, why wouldn’t they come over my house, at least at home I wouldn’t have to move around as much and if I needed to I could excuse myself.
While that was bad enough, it was worse that my husband didn’t understand. He still felt I was faking because I wanted to stay home. Sure I loved being there for my son, but I hated the pain and the fatigue and the brain fog. I actually liked working and being around people, I loved what I did, and I was good at it. How could he even think I was faking? That was ten years ago, I since lost many friends, the ones I do have now are good friends who understand, I am still married but my husband hasn’t changed. He will do things on days when I can’t even get up, but I know deep down inside how he feels.
I had to adjust to my pain and fatigue, I have learned who my real friends are, and how it feels when family and friends disregard the pain of Fibromyalgia, and I have learned what is really important in life. I have to admit my house is not as clean as it used to be, and I certainly do not garden as often as I once loved to do, but now my son is 15 and he helps much more, and I see his love and understanding every day, that means more than anything.
Having Fibromyalgia is bad enough but knowing firsthand how it feels when family and friends disregard the pain of Fibromyalgia is worse. I thank God for who I do have here in person, and I thank God for the many friends I have made online. They don’t care if I misspell a word, or don’t come online all the time, and when I don’t make sense that is OK too. Fibromyalgia is why I started writing, they say God works in mysterious ways, well maybe this is what was meant for me.