Dear Doctor: What Not to Say to Me and Other Fibromyalgia Patients
I know you are overworked, underpaid and taken for granted by our government. I realize you can’t work miracles even if you wanted to and the NHS is on limited funding. All I’m asking is your time and human understanding for a better quality of life.
I have been ill since age 13. I have had nearly every test available. My diagnosis at present is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia, with all the added symptoms and conditions they cause.
Unfortunately, I can only recall not even a handful of doctors who have been helpful. I understand there is no specific test and no cure as of yet, and treatment is hard to determine. But, I have reached a point where I am so deflated by going to another appointment and leaving feeling more ill, with more questions, and returning home trying to hold in the tears. I have had so many things told to me by doctors, some of which have been said to other patients in the same boat.
1. “If you work, it will disappear.”
Why is work so important when it comes to my consultations? It shouldn’t make you think any less of me or determine your approach. I would love to work. I had plans to work. I am sitting in this consulting room, hoping you can help get me to a point where I can hold down a couple of hours of work.
I can assure you I didn’t feel this anxious or depressed before I came into this appointment. Of course having this physical illness puts a strain on my mental health. I need you to see, though, that if I didn’t have this illness, it wouldn’t be such an issue. Please take any new symptoms I’m getting into account. Don’t blame it all on the fibromyalgia and anxiety, just because I’ve been diagnosed. Which I might add has taken me years to get diagnosed with.
3. “Be more positive, I’ll refer you for cognitive behavioral therapy.”
If it was that simple, I wouldn’t be writing this letter now. Yes, I will accept it will help to talk to someone, but not if they only care about my mental health and don’t take my physical health into account. The number of times they stop seeing me because some days I can’t physically get to an appointment does not help.
4. “Exercise more and you’ll be cured.”
I accept pacing activities is important, but don’t push me, I know my body’s limit more than anyone. If exercise was the cure, I would be cured by now. You only have to see the report on graded exercise therapy to see the damage it can do.
5. “Antibiotics will fix this.”
You give me these prescriptions sometimes to keep me quiet. I only want to take these if I really need to. Otherwise, they cause side effects and other conditions to an already oversensitive body.
6.”That’s not something you want on your record.”
7. “You are not trying hard enough.”
You can tell me you don’t have the answers. Just don’t write me off. Just because this illness can be invisible doesn’t make it any less real. Millions of people all over the world are proof of that. It may not be life-threatening to you, but it interferes and determines life living.
I need you to take the time to listen. I make the effort and use the little amount of energy I do have to come and wait what can be for hours for an appointment. I guarantee you I will be in bed for days or weeks afterward. Even trying to get a doctors’ appointment is hard enough. I get my realistic hopes up. I give you a chance. Don’t rush me out the door. If I felt I was getting somewhere with you, you wouldn’t see me so often. It doesn’t help that I see a different GP every time. It takes nearly most of my appointment time looking through my notes. I am not blaming you for this, though as I know it is not your thought. But these things don’t help the situation.
I go to every department at the hospital, where as I’m grateful for you even referring me, as that can take a huge amount of time for you to decide to do in the first place. It is all good, you looking and ruling out everything, but sometimes I sit there and think: wouldn’t it be better if all the departments could work together and actually communicate with each other for a patient with suspected fibromyalgia, ME/CFS or any chronic illness for that matter? It would save time and money in the long run.
ME/CFS and fibromyalgia should have a larger section taught in medical school. It first starts with education, then research. It should also be considered as a disability.
Offer me support. Help ease my symptoms. Help me cope better in living with this. Don’t compare me to other patients with the same condition. Each body is different even with the same medical condition. If I felt like you were willing to help me and were on my side more, things would become easier for both of us.
Let’s work together on this?
From your patient,
Follow this journey on the author’s blog.
Photo by Nicola Dreyer on Unsplash