ME/CFS and Mentally Preparing for a Medical Appointment

I had a hospital appointment this week to see somebody about my gut issues. When I woke up that day I felt as though it should be exciting. What if they could find something that can help me? But unfortunately I couldn’t help expecting them to dismiss me; to find nothing wrong; to judge me as a malingering, psychosomatic time waster. I felt defensive. I found myself rehearsing a description of my symptoms that would be able to convince them I am not well. I was almost disappointed that I’m having a good week this week: sometimes when I’m having a very bad time my illness isn’t quite so invisible; somebody very observant might notice my pallor, puffiness and dark eyes at least.

During the combined 11 years of my two incidences of this illness my experiences of approaching the medical profession for help have resulted in this very foreboding reaction to any medical appointment. When I first presented at my GP’s I was sent home with nothing more than the advice to drink lots of water, and a sleep hygiene information sheet.  Later I had a neurologist dismiss me as depressed, and tell me he didn’t care whether my depression was a reaction to my illness or not I needed to sort my depression out. I’ve been belittled at the hands of a junior psychiatrist who told me that everything I was saying to her could also be said by someone who was psychosomatic. She then came back to me after finding unusual blood test results and took some more blood for further tests, the results of which I was never able to discover because she had moved on to her next placement. Another GP told me not to worry because people with CFS just get better on their own. More recently my GP told me my low red blood count was nothing to be concerned about even if I was ‘a little under the weather’.

In fact I almost stopped consulting the medical profession altogether. On receiving so little help I realised I was going to have to learn how to deal with this illness on my own. And I was very successfully in my learning, which is why I write this blog.

However this time round I haven’t quite made the progress I did the first time round. My condition is mild, I make sure I have the best quality of life that I can, I am generally happy, but I don’t seem to be getting better. So I’ve decided to approach whatever accessible help I can find.  This time though I won’t give the medical profession the responsibility for my health. I’m still in charge.  I now approach them with the hope that if they can help me with a particularly difficult symptom or imbalance, it will take a strain off my functioning and will give my body a better chance of helping itself.

So on the day of my appointment I decided I had to let go of what has gone on before and focus on what I was hoping to get out of this appointment. I was ultimately hoping that they would be able to help me improve my gut health. At the very least I was hoping for a referral to a dietitian to help me manage my food intolerances (or at least  reassure me that I am already doing the best that I can). I was hoping to encounter compassionate professionals who want to do what they can to help. I was hoping that if they couldn’t help, at least they’d have the humility to accept that medical science doesn’t yet have a solution.

I’m pleased to report that all went well. The consultant decided there was nothing untoward to be concerned about, which is a good thing really, just disappointing that it  means there’s no treatment on offer. (But I kind of knew that anyway). he was at least acceptant that some people just have food intolerances and he has referred me to a dietitian because of my concerns about the extent of the foods that I have to avoid.

I’m pretty sure that it was my decision to take a positive open attitude that helped the experience go so smoothly. It’s so Important to let go of the past and encounter the future with fresh optimism!

Do your experiences of seeking medical help in the past cloud, the way you ask for help today?

4 thoughts on “ME/CFS and Mentally Preparing for a Medical Appointment”

  1. I am much the same in that my bad past experiences in seeking medical help make it more difficult for me to approach new appointments with an open mind. Reading this post has served as a brilliant reminder for me to drop my negative pre-conceptions before my upcoming appointments- so thank you.

  2. I manage my medical appointments better today then in the past – today, I no longer believe doctors are gods and the medical profession only fit for god-like people. I took my medical life back in 2014, meaning:
    1. I own my medicine – not the AMA, CDC, or other government agency
    2. I know my body better then any one – we’ve lived together for 55 years
    3. Doctors and their staff are no smarter than the average person – especially with the advent of internet and freedom of information – they just have letters at the back end of their name
    4. I have plans, goals, and later life expectation of newly found achievements and plans.
    5. Even at 55 years old, I still dream, aspire, and believe in the American spirit
    6. I am still worthy of respect, dignity, and to be treated as intelligent

    However, with all that written above the reality is this: all of that is one sided. My Side. No amount of prayer, hope, good vibes, positive thinking or compassion/empathy/sympathy can change the societal or medical mindset. They will always view me as old, unnecessary, time waster, whiner, etc.

    After 10 years of this fight I’ve got to move on… I cannot wait for society and the medical community to catch up on regaining their humanity. I’ll have to “be an example” and find my comfort in knowing I did not succumb to ugliness, meanness, etc. I’m more of an action kind of person any way… always moving to my own music. I’ll continue to do that, and maybe make my own music as well.

    • Hi Pamela,

      What an inspiring comment! I totally get the idea of letting go of the fight and moving on. The reality is that there is no comprehensive medical support for this kind of illness yet so the best we can do is work out how to give our body the best support possible in the hope that it will find a way to heal itself. In the mean time making sure that we make life as it is as enjoyable as possible. Long may you continue moving to your own music!



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