As a teacher I have spent my career trying to instil in students a sense of the importance of respect: respect for each other, themselves and the world around them. I try and teach them that respect does not have to be earned. They should assume that everyone deserves respect from the off. If they live this way, then nobody will feel ill treated by them and respect should come back their way.
Since becoming ill, I have had to consider whether reality matches the ideal that I preach daily. Unfortunately, not everyone understands this basic human right of respect. Today’s blog is not meant to be a moan however but a celebration.
Yesterday I cried, I cried and I cried and I cried. The sort of hysterical tears that you can’t control as much as you want to. For once these were not tears of frustration, pain or anger but of sheer unadulterated relief.
Relief that somebody who understood M.E. deeply had shown me some respect. As always with this illness you have to go it alone, you can’t just sit back and assume the medical profession will guide you appropriately. In my search for my right to informed, respectful medical treatment I came across the National M.E. Centre. A charity that offers a free support service to patients suffering from M.E.
Yesterday Sue, a support worker, called. It took a few minutes to lower my defensive guard, a guard being built up by the lack of understanding about what is wrong with me by those in the medical profession. I don’t doubt those I have come across so far mean well (though maybe not idiot consultant) but I always fear that a lack of understanding could led them to suggest inappropriate treatment. Her specific questioning, the time she took to listen to my responses and clarify what I said forced this guard to just fall away.
She was kind, caring, realistic, human. More importantly she understood. I have never doubted that I have M.E. – I can tick off most symptoms on the list. It is only when somebody who truly understands the illness says you have it, that you can be sure. This was a relief in itself.
Not everything she said was good, there are realities to face that I didn’t realise I had to. She made me trust her however and this trust means I don’t have to face these realities alone. She is sending me information and will call again in two weeks to support me further. The knowledge that there is now somebody out there who gets it, who has lots of experience with M.E. gives me hope, hope that with their guidance I can begin to make progress, I can begin to stabilise and find a way through the myriad of symptoms and potential treatments.
Far beyond her practical suggestions, her caring yet professional support is what has filled me with this hope. Little does she realise that she has also brought relief to my husband and my parents. They have been desperately searching for a way forward for me. While I am not foolish enough to think that there is now a guarantee I will get better and get the service I need, there is at least someone there who understands.
Now I feel my fight for access to a pain clinic, a proper M.E. consultant and an occupational therapist is backed up by somebody’s professional opinion. I will still have to fight and there is no guarantee I will get to see any of these but at least I know I am fighting for something worthwhile.
So today my positive thought is – having experienced the deeply emotional impact of being respected yesterday, today I must ensure that I don’t judge people, until I know them. I must respect the fact that I don’t know what makes them the way they are. Equally, I must fight for the rights of others to be respected. It appears just a tiny bit of genuine respect can have a far greater impact than I have ever realised.
You can also make a donation
Sort Code: 601801
Account no: 47344431