- For people to realize that Fibromyalgia is not fake and is a legitimate illness that has been around for a long time. Unfortunately because Fibromyalgia mostly affects women, it has never been taken seriously. It would be amazing if people reacted to a Fibromyalgia diagnosis with support, not judgement and skepticism.
2. To have the CDC, DEA, government officials, journalists, pharmacists, and strangers on the street to realize that most people who abuse painkillers do not get them from their doctor. People on pain medication are not addicts, they are regular people who just want to live their lives without excruciating pain. Fibromyalgia does not equal opioid addict.
3. Stop the war on yoga pants. They are the one and only true pant and you will have to pry them from our cold dead bodies. Yoga pants are pants, and anyone who says otherwise hasn’t had to squeeze their pain ridden body into a pair of skinny jeans.
4. Coordinated medical care. Fibromyalgia can affect every part of the body and patients often waste time shuttling back and forth between doctors. These doctors rarely communicate with each other which makes treatment much less effective, not to mention exhausting for the patient. Conditions that involve multiple systems need a care coordinator that can look at the whole picture.
5. More affordable medication. The costs of having a chronic illness are huge and rising medication prices do nothing to help patients who are struggling to make ends meet.
6. Non judgmental offers of help. It’s incredibly difficult for people with fibro to ask for help. Every time they ask they feel like a failure for not being able to do everything for themselves. It’s increasingly difficult if their inquiries for help are met with derision.
7. To be valued for who they are. A Fibromyalgia diagnosis brings a lot of changes,which makes patients feel like they’ve lost who they are. Often they feel like their failures because they can’t be the same person that they used to be. This can lead to loneliness and isolation. It would make this transition easier if Fibro patients had a loved one who reminded them that they are loved, appreciated, and have value.
8. For people to acknowledge that Fibromyalgia is not another word for lazy. No one in their right mind would use Fibromyalgia as an excuse to be lazy, because no one would believe them! Fibromyalgia patients are tired, sick, and in pain. They did not choose to get sick, it’s something unfortunate that happened to them.
9. For their boundaries to be respected. When you have Fibromyalgia you quickly learn that everything you do has consequences. Because of this most patients learn to be very strict with what they do and when. This is the spoon theory in action. Unfortunately many healthy people have problems honoring the boundaries that spoonies set up. There is a lot of pressure on spoonies to “just do it this one time” or to “just try harder.” Sometimes spoonies cave over the pressure, and then they have to pay the long term consequences. Other times they hold strong, but then they have to put up with the guilt trip from others as well as internal guilt for not being good enough. If healthy people would just respect the boundaries set up by spoonies, it would make a huge difference.
10. For people to stop selling them magic cures. Every person with a chronic illness has experienced a long lost friend reaching out to them over social media to offer a once in a lifetime chance to buy their amazing product. This needs.to.end. I don’t care if your uncle’s brother’s roommates’ girlfriend rose from her deathbed, just leave sick people alone.