Throughout my FM journey I have heard it referred to a condition, illness, disease, syndrome, disorder and probably several more classifications. Literal definitions aside, how do each of these nouns affect you? To me, having my FM referred to as a disorder or syndrome puts me on guard whereas if it is being referred to as a disease I tend to feel that it is actually being taken seriously.
Answer Summary
Members opened up about the emotional weight of how fibromyalgia is labeled, with many expressing that calling it a disease feels more... Read more
The medical tag of Syndrome is actually a good thing for us. It means we have a family of symptoms and issues which interrelate and are linked...Migraines, Generalized pain, muscle pain, tender points...it sounds redundant if you pick it apart. But it gives us the benefit ultimately. Especially in diagnostic settings since FM is a diagnosis of exclusion. If we can list a majority of the symptoms on the FM list as ours, then it helps docs to say what we have. Otherwise each of our symptoms have to be treated without consideration of the others...and that is a mess!
So, no its not meant to be belittling. IMO, just calling a disease is belittling. After all, it isn't the flu and we aren't going to "get over it".
I view it as an illness. And have since I've lived with it for so long. It's real, it's phsyical and biological. Because of the nature of this illness, it does effect us emotionally. It defintely is a hurdle and challenge everyday.
#TrishaH You're not being overly sensitive. My teenagers just think I'm being lazy. They will ask me if I'm okay, I look like I have a headache, etc, but then they say "you always have a headache or you're always tired!" It drives me insane. If you don't want the answer, don't ask.
Yes, it has to be taken seriously. I lost my job because of this disease. My life has taken a toll because of FM. Mentally, physically, socially and emotionally. You don't know when it hits you. One day you're fine, the next day you're in pain, feel miserable, trouble sleeping, feeling down and depressed. You have no energy to do anything. Seen all kinds of doctors and can't figure out where the pain is coming from. Took prescription meds to another prescription and nothing helps. Battery of tests and all came out negative. Some Dr's I've seen thinks I'm crazy so suggest I need to see a shrink. I know how I feel. It's real! I stopped talking to friends about my illness. Some understand some don't. I don't expect them to understand and and be sympthathetic. I wish there's a cure out there. I want my normal life back. Hugs to everyone in the team and hope you all feel great today and tomorrow.
I altogether hate the word Fibromyalgia. I guess it's because it was thought of as "all in your head" for so long. So I loathe the word. I do feel it should be called a disease. I feel people do take it more seriously if they know it is a disease, not just the flu, pneumonia, etc. that we will get rid of soon with meds.
I don't take it as belittling either. I somehow feel it helps others understand that I do have something going on with my body that is very painful. It was easier for me to quit my job and leave the job that I was so passionate about because I know I have a disease that causes me pain everyday. Even if I owe no one an answer or reason for quitting, it was easier for me to tell people. I guess I'm a people pleaser. Also this is new to me so I'm still in the beginning stages of accepting it and realizing that what others think doesn't matter. Even family.