Explaining ME to others

[flower9898]

Hello Everyone,

I've recently become a student and I've had quite a difficult time adjusting. Thankfully my university has been quite accommodating and my course is incredibly interesting and engaging. I'm not entirely convinced that I'll make it to the end of the course, but I'm going to give it a good go!

As you can imagine , I've met numerous new people over the past couple of months. There have been times where I've felt too unwell to carry on and have had to go home early. I also have problems walking and I feel that this is probably quite visible to others. Socialising during evenings and weekends is also currently unrealistic. My problem is that I'm finding it incredibly hard to verbalise this- how do I explain these difficulties to others? saying 'I have ME' often isn't enough, people just don't understand. I want to spread awareness but I'm afraid of exposing myself to people I don't know very well.

How do you explain your ME to others? would you only tell close friends, or be open to telling people you don't know so well?

Many thanks for your time,

flower9898

[Hidden]

Tell them if you had a car that has a litre of petrol in it, regardless of where you HAVE to go or WANT to go the car will only go as far as that litre of fuel will allow, so for you its similar - a case of using that 'fuel' to do the basic activities of daily living such as feed yourself study etc.

Explain that by pushing yourself to do more will result in you being exhausted for days and ask them would they like to suffer something like a cross between a flu and a hangover for three days. That in order for you to go out in an evening you would need the early part of the day to do little more than relax and prepare and that you would still have to go home early as certain things like socialising can use up the fuel quicker than sitting watching TV.

See if they will change things and go out early in the day that might make things easier for you.

For me I tell people as I need to, family and friends obviously all know. I describe it to them as I have outlined above, ( I add in that I can be like a drunk person - I would doze off easily and a lot of the time the thinking is scrambled with me not able to focus clearly to give a coherent answer) and thankfully all are quite understanding, but then again this is older people, younger people tend not to be as understanding due to lack of experience/knowledge I find.

You have the right attitude about keeping going, best of luck with your studies.

[Antony_M]

Hi there, this is a good question and I would have responded sooner, but I've been slowed down by terrible commuting times and general Xmas pressures.

It's great that your uni is being supportive. Explaining the condition to others is never easy and the frustration at what you can't do makes it hard to articulate. There are always 'nonbelievers' some of whom can be very disruptive - I had one at an Xmas do the other week who blurted out that she thought I was faking it. These people are negative and would criticise you no matter what you did, if it wasn't health it would be something else they'd find fault with, the way you look etc. The problem is usually theirs. You soon find out who your friends are when it gets tough.

I try to keep to matter of fact explanations about what I can and can't do and the impact or rather what I won't be able to do if I overstretch. Some people advocate using strong metaphors (feel like I've been hit by a truck etc.) but unless you're talking to close family or friends these can be counter-productive as others can assume you're self absorbed and exaggerating a condition which they themselves cannot see.

Lastly, I would give it time and have patience, it takes a long time for people to accept and adjust. I realised this after having returned to work and having gone through a process with colleagues many of whom had their doubts, when I joined a French class and felt that people found me aloof for dozing before the lesson and didn't grasp my mobility issues which could be as simple as my being unable to walk to a tea room in the college. Suffice to say after a few months I feel accepted and the teacher was great in sorting some parking for me next to the entrance.

My walking is terrible and I look drunk plus I can't go very far before my legs freeze or I loose my balance completely. It was a bold move but after trying out a wheelchair a couple of times including on holiday, I bought one of my own which has enabled me to get back to work as I can now get to the front door of the office and move around safely.

There's a definate stigma attached with poor walking, even when using a walking stick. I find people 'huff' and 'tut' and try to push past me when it's taking everything I've got to just keep it together and avoid hitting the deck.

Best of luck with your studies

Antony