Ok so I'm only going for the visual imagery here and not the actual meaning of the symbol, which is significantly more enlightening and uplifting.
When I first got sick I pushed really hard to appear like the person I had always been; I continued to be active and to push myself at work. I was clearly not very successful at maintaining the illusion, but oh I tried, and then I just couldn't anymore. So I applied for disability and this is where things get tricky and self-consuming.
Because, you see, if you are applying for social security you need to fit inside the standard box for disabled, meaning: if you cannot do something, you can never do something. And that does not apply to those with Fibromyalgia. We're like one of those silly string dolls where you push the right button and we collapse only to pop upright when the pressure (with a big P) is gone. That however, does not change the perception of disabled and so for the next 3-5 years you cannot, you must not; try to work, do anything physically demanding, or have any endurance ever. Truthfully, the majority of the time that's just fine by me, I couldn't anyway. Sometimes though I feel good, good enough to go for a drive, or maybe go for a walk, even go out dancing, or sit in a bookstore and devour an entire book in one setting, who knows. Those are the joys in life people just take for granted, the ones that I feel conflicted about. I feel conflicted because I know that I am being scrutinized and every time I bring myself up to a normal level that action will be perceived as something I am capable of and potentially used against me in my fight for disability. I need disability, but it doesn't mean I am never capable. The irony is if someone visibly disabled did any of these things they would be celebrated for their character and determination, if we attempt them, we are shamed for our deception and abuse of the system. The fact is; I am not capable of substantial gainful activity, but occasionally, I am capable of doing things that might appear so.
The problem with this type of perception is it fosters a disabled attitude, because often we need help and we know we cannot get help unless we can prove our disability. And since there is no non-contestable test to prove our level of distress we must display this symptomatically. Which means that when we have a good day we are reluctant to advertise it even to our friends and family because we feel a certain amount of pressure to be disabled-looking, whatever the hell that means. But the bigger issue isn't even with those around us but with the SSA system itself.
Here is this completely privelidged system I am inclined to be so grateful for, and yet it has also felt like a trap. It takes 3-5 years on average for a fibromyalgia claim to finish. In those three years we cannot work, cannot travel, cannot be seen engaging in physical activity, must constantly follow up with practitioners and repeatedly get affirming diagnosis which requires detailing every symptom (putting our illness front and center always) we cannot forget. So you can see how when everyone is telling us; to be more positive, to try new things, or get out there and relax, to not make our lives about our illness, how contradictory to our real lives that actually is. The worst part is not everyone has a system of support during those 3-5 years and what are they supposed to do to survive during that time? Not to mention that there is nothing in place to prevent these conditions or to effectively treat them either and the medical system doesn't cover the support needed to become healthy enough to work, so here you have a group of people sick enough not to work who are often poor as a result and can't afford the medication or services that might make them capable of working only reinforcing their reliance on this system and other welfare systems. A self-consuming system that provides no reward to work.
The big slap in the face of this is I like to volunteer a bit of my time when I feel good enough to do so, seems like I would be rewarded for giving back when I can right? Wrong, if I do too many hours of volunteering or possibly any at all depending on the type of volunteering, it could be considered criteria for substantially gainful employment and if I could (in theory) get paid for such work then that could qualify as a job. Despite the fact that it is unlikely to find a job that would pay you the same wage part-time you would get full-time and that there is no likely way you could actually survive on 4 hours of work a week.... Come on.
So you have a set of people who are struggling to constantly prove their disability which makes them feel guilty but also reinforces a pattern of displaying, which likely internalizes illness and perpetuates negative behaviors which in turn makes them sicker, inflamed by the fact they cannot be productive members of society or they will loose every right they have to get help. What. The. Actual. Fuck.
Chew on that.