When you have Fibromyalgia it’s almost like the quest for Dr. Right is literally a rite of passage. So many of us “Spoonies” have been frustrated by the lack of knowledge and often kindness we experience at physician visits. I am not immune to this scenario; this actually has been a heart-breaking experience. Don’t worry though; I think it has a happy ending.
I was diagnosed in 2014 by a physician whose middle name was “judgment” (seriously). When I went to her about my anxiety, which was way out of control, she looked at me like I was crazy. I already felt crazy, so it made sense at the time that someone thought I actually was crazy! So then there was a search for a new doctor.
I found a physician that I thought was wonderful. She is a D.O. and supposed to treat the “whole person” so I thought she was going to be a good fit. Which she was, until I went into a huge flare. She just threw “Fibromyalgia” drugs at me and ignored my other real symptoms like chronic anemia. She wasted so many months not really treating my health issues. However, each time I saw her I felt like she didn’t really believe me. So then there was a search for a new doctor.
The Silver Lining
I went to a rheumatologist that had helped diagnosis my arthritis in the past. Quickly I was reminded why I stopped going to her. She didn’t really believe me either. The silver lining out of this visit was that she recommended I start seeing other specialist, like a hematologist and sleep study doctor. That actually led me to Palo Alto Medical Foundation, where every physician has treated me wonderfully and respectfully. This is where I have found a dermatologist, hematologist, primary care doctor and rheumatologist. I finally feel hope that all of me will be taken into consideration!
For fun (not), I have made a list of hurtful things physicians have said to me since I have been diagnosed with Fibromyalgia:
- “Just think more positively and you will feel better.”
- “Rheumatologist just kinda got stuck with Fibromyalgia it really isn’t something we should be dealing with.”
- “Your pain isn’t dangerous. You should exercise- your going to be in pain anyway.”
- “My other Fibromyalgia patients are able to work.”
- “I filled out your disability paperwork, but I won’t fill out anymore for you.”
- “If this medicine doesn’t work, I don’t have any other options for you.”
Sharing Our Fibromyalgia Stories to Raise Awareness
These physicians were telling me they didn’t believe me with their words and actions. It is soul crushing to have someone treat you this way, especially when you already wonder what is happening to you and how to fix it. I have been treated like I don’t want to work, not that I am physically, emotionally and mentally unable to work. My hope is that by writing this post, I can spread more awareness of Fibromyalgia and Invisible Illnesses so that patient’s like me can get more support from our medical providers. We NEED more research done and more doctors to care about learning all they can about this devastating condition!
Here are just a few symptoms that people with Fibromyalgia suffer from:
- Restless Legs
- Irritable Bowl Syndrome
- Sensitive to temperatures
- Sensitive to sounds (my husband’s constant whistling)
- Sensitive to touch (along with rashes on the skin)
- Sleep deprivation
- Inability to concentrate or think clearly
- Fibro Fog (can’t recall names for objects/people)
I share this small list again to raise awareness, the more everyone knows about this condition the more likely research will get funded. As for me, I finally found a physician that understands and is on my side to help me take better care of myself and advocate for me. That was a wonderful day and I hope all with invisible illness get to feel that feeling. We are NOT faking it and we DO want to get better! Please share this post with as many people as possible so we can spread the awareness of what we “spoonies” have to go through to get good medical care.
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