Tuesday, 7 July 2015

My last doctor's appointment at university

Do you know what my doctor said to me the last time I visited before dropping out of uni?  I asked for a wheelchair, he said that he couldn't condone that and that I just needed to try walking.  I said to him I can't this is the first time I have left my flat since being back from Christmas, and I had to take a taxi. There is no choice but for me to use a wheelchair, I can't get to my lectures.  He told me that I did have a choice.  I told him that my health had deteriorated because I had been walking, and that to walk more would damage my legs more.  He told me that it was all in my mind and that there was no evidence that M.E. was physical.  I questioned it, he brought up XMRV in a very flippant tone. (If you don't know about this, it was a virus that was believed to be the possible cause of M.E. about 5 years ago. The theory had a very high profile, but has since been disproved, this has lead to the disgrace of the main scientist involved on the grounds of scientific misconduct).

I told him that I wasn't depressed, I loved my degree and that I really enjoyed it, but if he didn't help me I would have to go home.  He told me that it was "my choice whether I stayed or went home" in a condescending voice. I said that I had been getting a lot of pain in my legs, but told me that he "thought it was very odd" and "didn't know why that would happen."  He said that there was no reason for there to be pain in my legs, basically telling me that I was lying. I asked him to help me apply for a blue badge, (there was no parking outside my student building) and my parents were often visiting to help me.  We argued about whether or not my disability deserved a blue badge or not, and then if I even had a disability.

We did agree on one thing, which was that a referral to the local ME clinic was not necessary. I had already been to one before and had been discharged. They all give out the same information, and there is generally no benefit in going more than once.  I was far too unwell to visit one anyway and had of way of getting there.

At the end of my appointment, he complained about me taking up so much of his time, and for making him late for his other patients.

Needless to say that I cried a lot during this appointment, I was exhausted in pain and had nowhere else to turn. I could see my future running away form me! I have spared the details of the number of times that I cried and that he repeated himself.  I was desperate and seeing help and he mocked me.

You would think that with a chronic illness I am in and out of the doctor's a lot, but when experiences like this are common, it's easy to see why I avoid them.  I also know that they mostly can't help me, because M.E. has no cue, I just tend to go for run of the mill things.

Why have I written about this appointment and no others?  I have had many experiences of visiting doctor's who have held these views. In fact they all do initially, but once they realise that they aren't getting anywhere with the traditional technique, they tend to soften up... that or I move on. This was the first time that I had answered back, and I was surprised at what I got.  Absolutely no tolerance, no interest in my opinions, zero sympathy and I was accused of making things up. This doctor seemed to have no understanding of any of the research regarding M.E. that was newer than 5 years old, yet it affects more than 250000 people in the UK.

I hope for my blog to be a place of both positivity and truth sharing. Today it was for truth sharing, I want to reveal what it is like to suffer from a chronic illness. Experiences like this must be recorded and shared because otherwise thy will never change.

For those of you who don't know I left the university due to my M.E. about 2 weeks after this appointment. I am now at home and recovering, my health has stabilised and I think that I am gradually improving. My home GP has also allowed me to get a blue badge, wheelchair and is helping with the application for benefits. She is much more sympathetic and understanding, although unfortunately still cannot do anything to help lighten my M.E. See here for my strategy on improving my health.

I do not blame this doctor at all for the state of my health before or after my appointment with him. I know that he could not do much to help my M.E. in general.  But I do not expect to have a battle when I go to the doctor's over the existence of my illness or my sanity.  I did however expect him to help me with the simple requests that I had, including accessing a blue bade and discussing my pain and sleep medication.  

I don't want sympathy over this, I am over it as it happened more than 6 months ago. I would just like to raise awareness of what it is like for people with M.E. Stories like this are not uncommon.

I hope that you are all as well as possible today, and that those of you who need them have access to polite and informed doctor's. If not, I assure you that they are out there and you just have to look for them.


  1. Oh jenny, I am so sorry and angry to hear the doctor treated you this way. I know that Fibromyalgia is different to ME but I've had such similar experiences with doctors i've seen and its the most frustrating and upsetting thing ever - they just don't get it at all and are always more interested in prescribing me anti depressants.
    I'm so pleased your home doctor is helping you with the wheelchair and blue badge, are you applying for PIP? Your local citizens advice bureau could be hugely helpful with helping you get awarded that :)
    Sending lots of love and gentle hugs,

    Love Holly x


  2. It really is awful, the anger and sarcasm that he directed towards me was totally uncalled for. I am lucky to have a good home doctor, I get the feeling that she wishes she could do more for me, she is very understanding. I have had her on and off since I was about 5 so she really understands my situation. I hope that you are as well as possible today! x


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