Have you ever had a doctor not listen to your concerns about your health? Has a doctor ever dismissed your symptoms for your existing condition, only to find out later they were unrelated? Have you ever had a doctor treat you like your illness wasn’t as bad as you were claiming it to be, especially fibromyalgia? Well, if you answered yes to any of these questions you will definitely relate to this article on fibromyalgia and doctors. Here is my open letter to my ex-doctors that I want to send, but won’t.
- More FibroMomBlog articles:
- The Spoonie Exercise Challenge
- Searching for Dr Right: Fibromyalgia & Physicians
To the Primary Care Physician:
Dear Dr. T. I am writing to let you know how my health has turned out since we last saw each other. I went through so much pain and agony emotionally and physically that wasn’t needed. Remember how you thought my restless leg syndrome was a side effect of the Cymbalta? Not to mention, the symptoms of my severe fatigue and my inability to get any sleep? Well, it turns out that I had a severe case of anemia. This could have been detected if you would have just run a couple more tests. My Ferritin level was a 4! (This basically means the iron was not binding to my blood.) To correct this issue I was given an IV solution of Iron and have been doing pretty well on that front for a few months. However, this is something that needs continuous monitoring.
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My Struggles: Fibromyalgia & Doctors
Maybe you can recall, that when you wanted me to go back to work I cried? I told you how I was barely functioning and how severe the side effects of the Cymbalta were. You told me that you understood but there was nothing you could do for me. You advised me to find another doctor. I felt your actions were telling me that you didn’t believe me. You told me to stop telling myself that “I couldn’t do things” and start telling myself “, I could do things” with no care to my real medical condition that I had no control over.
My Concerns: Fibromyalgia & Doctors
I need you to know that by this point, I am almost broken not just physically but emotionally. I see a couple more doctors that treat me equally as bad. I am now afraid to see doctors, a fear I never had before. I often wonder when it gets bad if it is in my head or real. It sure feels real. I didn’t expect you to be an expert in fibromyalgia. I expected you to take my concerns seriously and maybe take some time to do some research.
To the Rheumatologists:
Dear Dr E and Dr C. I am writing to you because you both aided in my fear of doctors. I was dismissed by both of you! Although, Dr E was thorough in the beginning by sending me to other specialists and taking multiple x-rays and MRIs. After that, you treated me like I was bothering you with my fibromyalgia symptoms. Both of you, lumped all your fibromyalgia patients into one group. You treated us all like we were the same. I’m not an expert on fibromyalgia but I do know that we each experience different severity levels of symptoms. Yes, I have found that my diet and exercise levels directly affect my fibromyalgia symptoms. However, I am still in a constant flare! Do you hear that? After a year of suffering, I am still in a non-stop flare!
I feel like I have moments where I feel like I’m coming out of it, only to be pulled back in again. What I expected from you both is understanding, not condescending behavior. I was told by you “we advise all our fibromyalgia patients to remain active and that is why we feel they can work a full-time job.”
Does this make any sense to anyone else? It makes no sense to me.
Going back to work with Fibromyalgia
Since going back to work, I have missed many days because of my illness and doctors appointments. My productivity has gone down because I find it very difficult to concentrate. I am often late to work because it can be a challenge to get myself ready in the morning. I just wish you both would have listened to me and had taken what I was saying seriously and helped me work towards a solution. Instead, you left me to flounder alone.
My final point: Fibromyalgia & Doctors
You may or may not care that I am picking myself up. After being turned away from a doctor for my case being too complicated, I have found a new primary care doctor. He seems to be someone that wants to work with me towards my health. I let him know up front how I have been traumatized. I also advocated for myself by telling him that I would listen to what he had to say but I expected him to listen to me as well. After all, I am the one living with this condition, therefore having the most experience between the two of us.
Thank you for teaching me the hard way how to advocate for myself. I hope that you can consider my story the next time you lump all fibromyalgia patients into one group.
Why I am sharing
I share this with my readers for several reasons. The biggest reason is that sadly, I know I’m not alone in this feeling and reading this may give you comfort (you are not crazy). Next, I want those that don’t have fibromyalgia to know that each one of us is different. I want you to know that we are being treated as if our illness produces the same “amount” of pain in everyone. This is NOT true! Lastly, I really needed to get this out of my head, so in part this is therapeutic for me.
Advocacy
Healthcare needs to change. I urge you to contact your local representatives and tell them your story. If you are able to attend Support Fibro is hosting Advocacy Day in Washington DC, September 18 & 19, 2019. Follow the attached link to get more information. Please share with us in the comments if you do either of these advocacy items.
Hope in Health Coaching
There is hope! I know there are good doctors out there (at least I have heard the stories). I urge you to keep looking and don’t be afraid to fire the bad ones. Also, I urge you to find a health coach! A health coach can bridge that gap between the doctor and you. I recently became a certified health coach and I am excited to offer my services to my chronic illness community. My passion lies in helping others like me go from “my doctor said to improve my condition I need to change my diet and exercise, but I don’t know how” to “my health coach helped guide me to healthy changes and I’m starting to feel better.”
If you are interested in health coaching services please comment below, email or go to my Facebook page: Wellness Empowerment Coaching. I will provide you with a FREE consultation and if we aren’t the right fit, I will help you find the health coach that is right for you.
Luckily I have a great PCP that listens to me! But yes I get where you are and have been there myself.
I’m always so thankful to hear others are getting good medical care. I wish that for all of us. Hugs and thanks for commenting hun.
I want to go back to all of my doctors that I saw when I was younger when I had the most severe cramps and terrible periods. They told me it was all in my head. They couldn’t figure out why my feet got hot all the time and why I had such severe abdominal pain. There is so much more, like why I couldn’t get pregnant. They said some things that broke my heart. i would love to go back to them and say ” I’m not cured but at least now I am heard “.
The health care system can be a little messy, especially for those waiting to receive diagnoses such as Fibro. I’ve heard of people being misdiagnosed for years before getting the proper diagnoses. The fact that people’s pain is being placed into a ‘one size fits all’ approach is disgusting. I don’t have fibro but I know how frustrating it can be to lumped into that category, when everyone suffers differently at different levels.
I know a lot of people who have stuck with a doctor out of loyalty even though they know they are being misdiagnosed. everyone has a right to a 2nd opinion and should know that the right diagnoses, no matter how long it takes, matters.
There are too many people who have gone through situations like this with their doctors. I wrote a post a couple of weeks ago sharing my own story, but when I was writing it, i asked people on Twitter if they had experienced anything similar and I was shocked by the number of replies.
I know, I’m seeing the same thing. That is why it is so important that we speak out about what has happened to us. It isn’t right and it needs to change. hugs my friend.
Doctors can be so frustrating! I’m currently having a terrible day compliments of a medical professional that didn’t value my time. Thank you for sharing your experiences.
Oh no! I’m so sorry to hear you are having trouble. I hope it gets better for you. hugs
This was so heartbreaking to read 🙁 & it’s sad that it’s the reality for so many of us. So glad you found a doctor that actually works with you and is willing to go beyond the “fix your diet and exercise.”
Thank you, me too. It is really sad that I’m not the only one going through this!
It is not only doctors who turn us away, now it is Dentist and Orthodontist. I thought I was lucky! I found Lifeline dental, an organization that helps to find dental work for the disabled. Everything was going fine until I needed my second dental surgury with a Orthodontist. During my third procedure I cried while getting a shot. They were compassionate at first but now have made every excuse in the book not to treat me. I really needed this surgery in hopes of saving my upper teeth. Great! Now I not only have pain everyday but will be toothless on top of it. Is the discrimination every going to stop?
I’m so sorry you are going through that! That is why it is so important that we let our voices be heard. Hugs
Crying because this is me and I can’t even get a diagnoses that explains my symptoms. All of my doctors for the last 34 years have tried to put me on daily Ibuprofen for the constant pain (sorry, docs, but it doesn’t help). My current doctor wants to put me on depression meds for my fatigue. The only doctor who did any decent testing was an alternative practitioner who stated that I was anemic and had a systemic yeast infection. But nothing she gave me seemed to help except the digestive enzymes that she suggested I take. I have been diagnosed with chronic migraines, TMJ, IBS, and PTSD. What gets me is that I yelp for all 18 of the fibromyalgia tender points. Multiple doctors have done the test, looked at me funny, but never diagnosed me as having fibromyalgia. And when I can’t make it out the door to work on time, people look down on me like I am purposely doing something wrong. I feel like I am drowning and everyone is trying to push me under. I am so frustrated from 34 years of searching with no definitive answer.