Firstly I will warn you all that I'm not having the best of days, brain fog is at an all time high as is exhaustion, pain, & nausea. So please bear with me as there maybe words missing or this post in general may not make much sense - actually do any of them make sense?
Right down to business then... I'm sure I've already mentioned that the doctor who diagnosed me with CFS has since left the surgery I attend & then I saw a locum doctor that was only there for one day. The locum doctor set up an appointment for me to go see the rheumatologist to be checked for fibromyalgia as she felt this needed to be ruled out before carrying on with my referral to the CFS Clinic. As that check resulted in me being told what I already knew; I don't have fibromyalgia & it's definitely CFS, I then had an appointment made to see the only doctor left at my surgery at that time (there's now a few more there thankfully!) to sort out getting my referral done for the CFS Clinic.
Now I was already apprehensive about seeing this doctor as a couple of times my mum has seen him & he's been very unprofessional - even texting people during one appointment with her! But I had no other choice at this point as he was the only doctor available. So in I go & I give him my background, diagnosed with CFS, have a referral ready to be out in motion & asked nicely if he could continue that for me.
He pretty much refused that, kept asking what help I thought it could be & quite happily told me that all the doctors that specialise in CFS are crazy whack jobs! When I said I'd been checked for fibromyalgia, he told me that was just a fob off for muscle & joint pain! By that point I could feel the anger building up inside me & it took every part of me to keep calm.
He asked me about my life overall & what I thought the trigger point of my illness was - I explained I'd had quite a bit of stress in my life but not anymore & that I'd had a very case of flu that I never felt I'd got better from properly before going back to work. He asked if I slept & when I said I have nights where I struggle to sleep, he decided I must be suffering from stress & anxiety because to him CFS isn't real!
He then began asking me about my social life, if I went to the pub & had a boyfriend (like that has anything to do with my referral!) I explained that I used to be very active, I used to horse ride & enjoyed getting out when I could, though I've never been a pub goer. I also explained as a Jehovah's Witness, I do activities associated with that though now in a very limited capicity due to my CFS as I've been told to try & use the pacing method to help me recover & also the payback from being over active isn't the nicest of experiences. I guess I could be classed as housebound to a certain degree.
I felt he got even more closed minded, arrogant & demeaning once he heard my choice of faith, something that's not uncommon but since when does faith sway a doctors medical advise? A doctor is there to help do whatever they can to treat your illness no matter your faith, it is then up to the individual to choose whether that treatment will effect their belief system or not, (for example I won't accept blood) however this did not happen in my case. I was refused my referral, given a prescription for anti-depressants (I'm not depressed, I have CFS!) & as a final bout of medical advice was told to go to the pub & get with the first guy I meet!
As you can imagine I was fuming by this point & was glad to leave. I'd kept my cool all the way through the appointment as I knew shouting or showing I was angry wouldn't have done everything to help the situation. Once I stepped out of the surgery, I pretty much broke my heart for the rest of the day. Though over the past number of years before my diagnosis, I've seen doctors that didn't think there was much wrong with me & have told me "some people are just like this, just have a weak immune system, there's nothing else wrong", I've never been treated like this & in effect refused treatment before.
I've read experiences of people with CFS having this sort of dealing with doctors, being dismissive of the illness as if it doesn't exist, having anti-depressants being thrown at them even though that's not what's wrong & I've always realised how blessed I've been to have found a couple of doctors that actually listened & tried to help me get the treatment I need to get better. Sadly because those 2 are no longer at my surgery, I've now been treated to the same experience as many of my fellow sufferers & it's truly soul distroying! My heart always went out to those having issues with getting doctors but I guess, if I'm being honest, I've never truly understood the effect it has on you until this happened. I was left feeling that there was nothing else to be done, my recovery was nonexistent, I'd be doomed to a life of no life & I might as well just give it all up now & be done.
Doctors are not suppose to make you feel that way! Doctors are suppose to listen & help in any way they can to make you feel better or refer you to the doctors that can help with treatment if they can't themselves. They're not suppose to allow personal prejudice to sway their attitude of a patient, as I felt was done in my case. I don't think they should be so demeaning of their fellow doctors, no matter what they specialise in. It makes me also wonder just what, if anything, they are taught regarding M.E/CFS when at medical school; do the the schools recognise it as a condition that doctors in training need to know about? Or is it not seen as important & if your lucky, you get a doctor that is willingly to "learn on the job" & research it further in their own for you? This was the case with the doctor that diagnoses me, she recognised the condition but had never had experience with it, but was willingly to find out about it & the help that might be available.
So there you have it, my firsthand experience with a doctor that really doesn't deserve the title. I took pleasure in tearing up the prescription he gave me, there's no way I'm taking medication for an illness I don't have that's going to make me sleep all hours of the day. The payback for the upset wasn't great but I soon managed to shake off the wanting to give up feelings that came with it. I'm still here, I'm still smiling & I'm still fighting!
I'm giving my surgery once last try, I've got an appointment with a new doctor that's just arrived this Friday. I'm hoping she's going to help get my referral going again, even if it likely means I have to have all the blood tests done again. If she is no help, then we have forms ready to fill in to move to a different surgery, I am praying it doesn't come to that as the hassle of moving & sorting out my prescriptions is something I really don't need on top of anything else.
I also have a physio appointment later in the month, to see if they can help me gain back some of the strength in my muscles that I've lost due to not being able to exercise properly anymore. Then In June I have a consultation with a bioresonance specialist in Leeds but I'll tell you more about that after it happens, but I'm hoping it will help get me better & get the life that was stolen from me back.
If you're having to deal with horrible unhelpful doctors while dealing with CFS, the best advice I can give, is the same as the ME Association gives, keep trying new doctors until you find one that will listen & takes you seriously! I know it's hard, especially with what we already have to deal with but keep going, keep fighting & you'll get there, the good doctors are out there, I came across 2 of them & they really did help, it's just annoying that they're not still at my surgery.
Ok well rant over I guess & now it's time for me to go get a cup of tea & maybe a granola bar. But before I do, I just want to remind or make you aware that it's M.E Awareness Week, next week. The main day is the 12th of May but please do google it to find out more & help rise awareness of this illness & donate what you can to the charities involved - Invest in ME, Let's Do It for ME & The Big Sleep for ME are the main parties involved if memory serves me right. Go look them up, check out what they're up to for the week & see how you can get involved if you want or how to donate much needed funds to help with vital research of the illness.
In the mean time, take care all of you & I'll try & post again soon.