Those with fibromyalgia have a frustrating life, that’s for sure. Not only do we have to deal with the pain, fatigue, among other things, and not knowing how to deal with it all, or being able to lead a full normal life. Another area of frustration for us is dealing with doctors, it takes so long for us to get this diagnosis, then we never get answers as to what will help, or happen to us in our new life journey. There is so much more that we need to help us.
Here is a compiled list of 20 things different people have said that doctors can help us with. I did not write this list, I just want to share it with you.
1. “Believe us. We know our bodies despite what the testing comes back as. If we say something is wrong and the routine tests come back negative don’t dismiss us as stress-related. We understand that for some stress does cause problems, but if we don’t think it’s stress-related don’t dismiss us.”
2. “Do further research. So often I hear the words, ‘Well, this is a rare disease, so…’ and then they trail off. I’m left siting there like, ‘Yes, I’m aware of that. Who else can do more research? Further testing? New medications?’ That’s you, doc. I guess I’d like to feel like they’re going the extra mile rather than writing me a prescription and sending me off.”
3. “Just listening with an open mind and realizing everyone doesn’t necessarily have textbook symptoms is so important to me. Also when a doctor is willing to say they do not know about my illnesses instead of dismissing me, I am always grateful.”
4. “Quit scheduling patients with chronic illnesses in a 10- to 15-minute appointment spot. When a patient is dealing with complex health issues the last thing they need to feel is pressured to say everything they need to say in such a short time period. Sit there, make eye contact with me, and actually listen to what I’m saying and not what you think is being said!
5. “Think outside the box! Don’t keep prescribing the same treatment course if there’s been no progress or improvement!”
6. “Collaborate with me. If I’ve come in with a theory about what’s wrong with me but it’s rather unlikely, ask me what led me to that conclusion, ask me about the symptoms I have that line up with that illness.”
7. “Ask more specific questions and give us more specific guidelines for when we should call the doctor or go to the ER. I have lupus. Everything hurts all the time and I don’t know when I’m supposed to know it’s something serious.”
8. “Get their heads out of their computers trying to fill in all the sections of electronic records and look and listen. Our illnesses and symptoms don’t always fit into their electronic paradigm.”
9. “I believe doctors could better care for their chronic illness patients by imagining them as their daughter, sister, son, or friend — remembering we are real people whose real lives have been profoundly interrupted by illness. A small amount of empathy could go a long way in creating better care. Perhaps doctors could receive continuing education where they have to hear patients share their life stories and/or practice empathic listening and communication skills.”
10. “They need to work on trying to understand the disease more and keeping up to date with new findings in regards to medications.”
11. “I understand doctors are under a lot of pressure themselves and may be can’t commit as much time to their chronically ill patients as they would like, but maybe they need to be more upfront and honest with us rather than just saying whatever it takes to get us out the door — for example… ‘I want to help you so let’s book in a double appointment next week,’ or ‘I tell you who is really great with this sort of thing — Dr. So-and-so — see if you can get in to see her soon.’ Just slight things like that can make all the difference.”
12. “Reread the chart before walking into the room. They try their hardest, but there’s no way they can remember everything.”
13. “Don’t just throw meds at us within five minutes of meeting us. Don’t be cavalier about side effects — some of the commonly prescribed meds can give us everything from vision problems to suicidal ideation. We may decide not to risk that, especially since there’s often very little return. Understand and work with us to find a treatment plan that works for us.”
14. “Help us coordinate everything. Many of us have multiple issues and see different types of consultants. It’d be nice to have better coordination and collaboration between everyone concerning meds, symptoms, and treatment options.”
15. “Realize our pain levels go well beyond their pain chart. Understand that just because we go on living our lives and being as active as possible, that doesn’t mean we’re not in excruciating pain while doing so. Address pain at every visit and give options for pain relief at every visit. We may just change our minds about what is needed in between visits.”
16. “Don’t give up on us. I know it can be hard when you see us so often for maybe a tablet not working and such, but we aren’t doing it on purpose, we don’t like coming this often either.”
17. “[Don’t] assume every symptom is from the illness we have been diagnosed with. Something else could be going wrong… don’t assume and say it’s just fibromyalgia. I hate that. Because it makes me feel like you don’t care what’s currently going wrong with my body.”
18. “Quit overbooking your offices and have us waiting over an hour in debilitating pain. You give us an appointment time so just stick to it. It’s time management, and while I understand things happen and some patients do require longer care, inform us and tell us to come in at a later time.”
19. “‘I’m sorry. I know what you’re facing every day isn’t easy’ — what I wish they would say.”
20. “Give me hope! I always leave feeling worse then when I went in. I realize my conditions are worsening, I can feel my body. But I still need to believe I can get better or have a few better days ahead. That’s all I ask! Have a heart, I am a person.”