Labels are not preferred at all by many, but in our current society, they are unavoidable. This thought ignited a conversation about the different titles that Fibromyalgia sufferers (see, I just did it) like to be called: Fibro warriors, sufferers, patients, spoonies, etc. This is an attempt to address this question, and to give our readers a chance to weigh in on what they feel is an appropriate term to represent the community.
List of Titles
Any time that I am writing about Fibromyalgia pain or symptoms, it is easy to toss this title around because it is obvious that many people who live with this disorder are in fact suffering. Every human suffers mentally, physically, or emotionally at some point in their life, but Fibro folks are forced to experience more of it than most. The Webster’s dictionary definitions of “suffer” are:
1 a: to submit to or be forced to endure: suffer martyrdom :
b : to feel keenly : labor under: suffer thirst
2: undergo, experience
3: to put up with especially as inevitable or unavoidable
4: to allow especially by reason of indifference: the eagle suffers little birds to sing — William Shakespeare
1: to endure death, pain, or distress
2: to sustain loss or damage
3: to be subject to disability or handicap
Most of these definitions seem to apply to Fibromyalgia. It is something that you are forced to endure, labor under, and are subject to, and it is unavoidable, or you would not be suffering from it. However, there is an underlying sense of victimization that is associated with the word suffering. People at different stages of the process of this condition may feel like a victim, while others will want to distance themselves from that status. I know, as someone who has dealt with chronic pain for many years, I may go through the spectrum from victim to warrior in the course of an afternoon.
This one is the complete opposite end of the spectrum from suffering. This term is all empowerment. Fibro warriors are not content to be a victim, but fights with all of their being against this condition. This is an important tool in the mindset of any person who lives with chronic pain, but for some, Fibro warriors seems too militant to identify with all of the time. I think that in the course of the disorder, everyone will eventually come to feel like Fibro warriors, but it may not be the best term for everyone every day.
This is one of my personal favorites. The idea behind this idea is Spoon Theory that basically says that people who deal with certain disorders have to ration their energy use throughout the day. They measure energy “units” in spoons, hence the name. This idea has been a part of my life long before I had ever heard of Spoon Theory. When using this term in writing, not all Fibro people actually identify with (or indeed know about) Spoon Theory so it can be problematic. Also, Spoony can apply to many conditions aside from Fibro so some may not feel it is an adequate term to classify Fibro people.
This is a term that has a lot of positive associated with it. One thing that we strive to foster at FibromyalgiaTreating.com is a place for this community to communicate, learn, and grow. The fibro community is a strongly united group, and it would be far harder without that community around you to listen, empathize, and help each other. The only drawback to using community is that it is not a great term for individual identification. However, firo community will always be a part of Fibromyalgia Treating.
If you have ever been to the doctor for Fibro related reasons, then you are a fibro patient. This term seems very clinical, and implies that you are in treatment. This may be true, but that is only one aspect of a person dealing with fibro.
That seems to be the issue with many of these titles. They do not adequately describe the entirety of the experience of a person with fibro, but only one of several aspects of living with the disorder.
Is there a term that covers everything? If so, what is it? How do you prefer to be addressed, and what do you identify yourself as? Please comment below and let us know your thoughts.
The preceding article is from FibromyalgiaTreating.com and is posted here for sharing purposes only. For additional information, please visit their website.