Points for discussion
Personal problems in relationships - with family
As this disease is not always the same, ie one day not too bad, next day cannot get out of bed, people find this hard to accept and perhaps to believe at times. This is often when the name calling of lazy occurs, which is of course so inacurrate as well as hurtful. It affects so many things, a few examples, planning outings, holidays & travel, distribution of housework (may seem such a silly thing to add, but believe me it can become a monster of a problem with all sorts of resentments-on both sides growing away), people thinking you just want to be the centre of attention.
Personal problems with friendship and social life
Afraid to make arranegments long term,in case you have to cancel last minute, the need to ensure there will be a seat etc takes away the ability often of sponteniety. Some how it ends up that everyone comes to you to visit as its easier, then they always visit you but forget to invite you to theirs when they are having a "do". You can so easily end up feeling such a nuisance to everyone,till you dont care much anyway!. If you have, at some point,had any problems with your jaw, or innards, you may not care to eat in public either.
Problems with work situations- time off - attitudes
The constant struggle to try not to have sick time off work in case it puts your job in jeapardy, especially when people do not understand AS, and cannot appreciate that you can be quite well one day, yet unable to get out of bed the next. This often causes cynicism in their attitude to you. If you do not have a senior/manager who is sympathetic, often you feel you are being monitored more closely than others, perhaps to show you cannot cope with your job, plus often passed over for promotions, again in case you cannot cope.
Coming to terms with disability
At some point we have to accept that we have a disability. Acceptance of your limitations and learning to live with them can be a very difficult thing to do. Women feel they are the home makers and can find it difficult to let go of control in the home especially. Learning to be kind to yourself is very important otherwise you can end up in a continous battle, fighting your condition and becoming depressed when you realise you will never, ever beat it. You must negotiate a way to live with it in terms of medical assistance to ensure you are as pain free as possible, and with your family to communicate when help is needed/to recognise when help is needed.
Dealing with the attitudes of strangers
People can often be either overwhelming in their need to help, or are too embarrassed to to try to help, so ignore your condition. Instead of irritation, it helps to either thank them and show appreciation for their concern,but explain what you can manage. For those who ignore your AS, that may work fine, or you may have to simply explain the situation to them. or ask people to slow down,or whatever and explain what you can manage. But trying to be understanding and not irritated - At some point the acceptance has to come that you have a disability, acceptance of your limitations and learning to live with them, to try and be kind to yourself otherwise you can end up continously fighting your condition and becoming depressed when you realise you will never ever beat it, you need to negotiate a way to live hand in hand can be very difficult.
This is an article I am submitting, so thought I might as well post here also