Hi runner,
I must warn you that I am adding this sentence after writing the main body of my reply that has turned into something of an essay!
I must admit that I have only read a few of the posts in this thread, skimmed a few and not properly digested all of the replies. So! If this posts reads like repetition of others I can only apologise!
In a similar way to you, I started using walking aids to help with my balance. In fact, in 2008/2009, an accident at work where I fell and badly injured a knee not only had me on crutches but led to permanent use of walking aids and further investigation of my health. It seems I have had ataxia (and fibromyalgia) all my life but have just 'got on with it' up until that accident acted as a catalyst for the condition(s) to worsen and become more permanent.
It has taken about five years of testing, prodding and poking for me to get a firm diagnosis of 'gait ataxia' with 'undiagnosed' other ataxia(s) in play around my body. Those five years, as you can imagine, have been tough and I have had to learn and adapt the way I get things done - just like most or all ataxians [sic].
I am something of a private individual just like you. As such, I keep myself to myself mostly and have found it difficult to explain my ataxia to others whether they be family, friends, acquaintances or strangers. This forum (LWA) has really helped me to be more open about my ataxia and helped me realise that I am not alone in the problems we ataxians all face. It can still be hard to explain ataxia to those asking about it though - even when explaining for the 'umpteenth' time to the same person.
I'm fortunate that, for the most part, my close family and friends understand that I have a genuine condition and accept my short description of it. I usually describe my condition like this; "Ataxia means lack of order in the body and it affects my balance and coordination. If you would like to know more about ataxia then you can sit with me and talk about it or your search engine is your friend!" this is most often suffice. A major problem, as you show to have experienced, is how to tell old friends or 'distant' relatives that you rarely see about ataxia. Many such people will either not have heard of ataxia or only heard of it as a temporary condition following a medical operation or a bad accident and will have a hard time understanding that our ataxia(s) are real, often disabling, progressive and degenerative conditions that are accepted by a growing percentage of the medical profession and by government bodies.
Probably the worst problems when trying to explain ataxia come when trying to explain our condition to a stranger or to someone that simply refuses to believe that we have genuine medical conditions. Strangers are often sceptical and can be very rude and hurtful in their behaviour towards an ataxian. It is worse when such behaviour is shown by someone we know. Sadly, no matter how we try to keep our affairs private or keep ourselves to ourselves, there will always be people that think or insist that they have a right to intrude on our lives and a right to know what we claim to have (condition) and a right to dismiss us 'out of hand' when they do not believe us when we tell them the truth or try to explain ataxia and how it affects us.
I would suggest that you try to continue as yourself, try to ignore any offensive behaviour and 'move on' though I know this is not an easy thing to do. Having a short, prepared statement, maybe with reference to a web site about ataxia, as an answer can help when you feel the need to explain your ataxia to friends or family or others you know. Importantly, DO tell your friends and family about your ataxia! Mostly, they will be understanding and supportive. Remember too that most inquiries from family and friends about your ataxia come from genuine concern or the person feeling that they want to help in some way.
Where you are confronted by a stranger, the short answer can be helpful also. If the short answer is not enough to satisfy the stranger then there is little you can do other than point that person towards a web site or search or remove yourself as best as possible from the situation. If a stranger persist and this turns to harassment, consider calling for assistance if other people are around as this will likely be enough to send the harasser packing. In extremis, where someone continues over a period of time to actively cause nuisance or harass, do not be afraid to seek advice from local authorities and or police.
As for the quote; 'it REALLY pisses me off when everyone is staring at me and asking me questions about my crutches! Why can't they just understand that some people can walk fine, and others need help and just leave it at that?'. Though I have touched on this already, I will add; the fact is that those people do not have the legal or moral 'right' to harass anyone. Unfortunately, they do have the 'right' to be ignorant, insensitive (to the point of being obtuse), questioning, incapable of accepting difference, rude and generally intolerant. Try to ignore it when people are like this and or move away from the situation as there is little else you can do. It is fine and useful to answer questions regarding your ataxia. Never get yourself into an argument or put yourself in danger over this matter though.
I and, I'm sure others do (see thread), carry a laminated credit card size information card. On one side, my card has some basic information about me including a photo, an emergency contact number (be careful in choosing and using such) and statement that I am affected by ataxia. The opposite side of that card has more detail, in list form, of how ataxia can affect me. The card has come into use for me only a few times when trying to explain my ataxia and once when talking to a police officer that did not know what ataxia is! It may even be possible for you to become registered disabled with local authority. I know that some people see this voluntary registration as a bad thing with negative connotations though. Another card I carry is from my local council and shows that I am recognised by the council as being registered disabled. That card can be useful as a form of ID when proof of disability may be needed - such as when buying disability related goods or service that may carry a discount for genuinely disabled individuals.
Well! That was a long answer! I do tend to go on some when my cage is rattled. I hope at least that there is something in my reply that you (and others) find useful in some way. Kindest regards to you runner and all.
