What gifts do people with Fibromyalgia really want?
The gift of people to realize that Fibromyalgia is not fake
Fibromyalgia is a legitimate illness that has been around for a long time. Unfortunately, because Fibromyalgia mostly affects women, it has never been taken seriously. People should react to a Fibromyalgia diagnosis with support, not judgment and skepticism.
The gift of people to stop accusing people with Fibromyalgia of being addicts
It would be an amazing gift to have the CDC, DEA, government officials, journalists, pharmacists, and strangers on the street 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 addiction.
The gift of coordinated medical care for Fibromyalgia and doctors that actually listen
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.
A doctor that actually listens is worth more than anything else in the world. Even if they don’t have answers, just being validated makes a huge difference to some with Fibromyalgia
The gift of 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.
The gift of 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.
The gift of being valued
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.
The gift of not being accused of laziness
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.
The gift of having boundaries respected
With Fibromyalgia you quickly learn that everything you do has consequences. Because of this most patients are strict about 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.
The gift of people not selling them “magic cures”
Every person with a chronic illness experiences 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 roommate’s girlfriend rose from her deathbed, just leave sick people alone.
I’ve had fibromyalgia and ME since 1996. During that time, I have tried many different ways to alleviate the symptoms such as; prescribed drugs, accupuncture, reflexology, Chinese herbs, cups, diets, cannabis, graded exercise and rest, to name but a few. I’m working part time, but I’m finding it harder and harder to stay in work. I have tried to find a company to insure me should the worse happen and find myself unable to work, but unsuccessful. I now have the added stress of losing my job, which will mean that I could lose my home as a result. I find it very difficult to believe that you cannot insure against this type of illness. I am new to fibromyalgia blogs and have yet to find an article covering insurance. Needless to say, the additional stress has had a negative impact on my condition. I would also like to know how those diagnosed with fibromyalgia can verbally communicate with others and remain positive.