How to tell people

General
1

So I had a family event tonight where I saw a bunch of family/friends of the family/people I haven't seen since I was 10 years old, ect. And when they saw that I'm walking with forearm crutches, every single person asked why I'm using crutches. I was very recently diagnosed and I'm a very private person so not many people know about this yet. So, I just told people I have a knee injury and that the crutches are temporary. I know that line won't work forever, so I'm wondering how you all respond when someone asks you "what happened?" when they see your walking aid? Do you tell them you have ataxia? What would you suggest for a private person who doesn't want people knowing what's wrong with me, but still able to get the message across that I'll be using these crutches forever not just for a few weeks?

And just a side-note/vent, 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? They are so curious and think they have the right to ask you the most personal questions about your life! It really bothers me. Okay, venting over!


--Runner

2

Same problem. I give up saying I’ve got ataxia practicly no one’s heard of it.I got so fed up trying to explain. I should print a shed load of fact sheets and say there go read this. People should be more informed .so when you say ataxia enough said.

3

Maybe If you tell them you have Ataxia and then ask them to google which type of Ataxia you have will stop the questions. Once they know, then they won`t ask a second time why you need the crutches and they will just ask how you are. Hopefully then people will look past the crutches and see you there. Family and friends I find ask out of concern mostly. I know I asked someone recently why they were using an aid but that was out of curiosty on whether they had the same type as my family member. Remember that no matter what, you are an amazing person doing your best with a condition that compromises your mobility.

4

I agree with John, I just had my annual Halloween party and something like 70 people came and I sprayed painted a cane to match my costume. Some people already knew but some asked other people is that part of the costume, I didn’t care. But 6 months ago maybe, but now I don’t. I guess it is stages you go through, but now I’m happy. I move slower and walk funny, but I don’t care what people think. That’s just my opinion anyway. I wish you the best.

5

Hi there.

I too use arm crutches for my ataxia, I was diagnosed in 1998. I sympathise with your dilemma/frustrations, however I believe you have just missed a big opportunity to let your family & friends aware of your condition. Unfortunately, it can only become worse and you'll have to let them know eventually. You'd be surprised by their sympathetic reaction, they could be able to help/assist you. I was paranoid about my speech & mobility, but once I started telling people, I felt so much better & self-confident. When I started using crutches, I went from people perceiving I was 'drunk', to people showing respect. Unfortunately, there's hardly any knowledge of the condition out there, so the more we tell people, the more people will know!

Good luck for the future, remember no one asked to have ataxia, but unfortunately we have to make the best of what we've been dealt. Get over your embarrassment and tell people. I'm sure you'll feel better!

6

Thanks everyone. I know it's definitely a pride issue, as I used to be so active before all of this and I'm just frustrated not being able to do things I used to do even though this is really early in all of this for me. It definitely would be easier if people knew what ataxia is! If I said "Oh I have MS" everyone would get it, but with this it's like you're speaking a foreign language!

7

I let people know, especially at work - the last thing I want is to be moving slowly with or without a cane or crutches and get pushed from behind! People asking over and over - I just tell them "I have Ataxia - it affects my balance like MS" since most people have heard of MS and know what it's all about. If they are interested, I'll go into more (depending on who they are) - if not, at least they are aware and won't bother me anymore about it. If their curiosity bugs them, then Google is their friend!

But I admit I'm not an overly private person - when something is outwardly noticeable I let people know the reason instead of having them draw their own (usually unflattering) conclusion.

8

I found that people used to actively avoid me before I started using a stick. They often crossed the road, thinking I was falling down drunk but now it's only family and friends in social situations who ask, and that is probably because they care. I have an active social life that my condition is not going to ruin and I keep an active profile on social media, including regular postings about how I am feeling at any particular time. Most people I know are thus well informed and just accept me as myself.
It does take determination to live with a debilitating condition but once you realise it is not a stigma or socially unacceptable or indeed, anyone else's business then you can just get on with your life without worrying what other people think :O)

9

Be honest, be yourself! They are your friends and family, they will be accepting and love you for who you are!

10

Dear Runner- I can appreciate your frustration. However, I have had ataxia for over 9 years and I learned that it is actually good that people are curious and stare. It gives me an opportunity to tell people about ataxia. John Mauro has an excellent series of short videos about ataxia featuring his wife for just this issue called DID YOU KNOW and Jonas had a great video about ataxia. I've learned so much and I live with it! Tell your friends/family that these videos are very informative about ataxia.
I think that we have to be reluctant spokespeople for friends/family/kids/strangers, etc. I know it's hard and sucks but we have been dealt a terrible hand and we have to share. Americans are kind of ignorant about disability...

11

I have gotten tired of telling people I have Ataxia, so I tell them I have Spinal Cord Injury; they think I have MS - no. Am asked daily - a pain.

12

Hi Runner,



I agree with dlc completely. Don’t hold back, tell people what you have. Make it short and simple, something like “it is a degenerative disease of the brain”. Once they know, they will not ask anymore.

Talking about it is the best way to spread awareness.

Most people are very kind to disabled (my experience anyway). Don’t be self conscious about the way you walk. By not telling them right away, you are only pushing away the day you will not be able to hide your ataxia anymore and you will have to tell the truth.

It is difficult, yes, but hang in there, don’t spend energy in frustration, you need to find peace with the fact that there is not much we can do about ataxia…



I know, easier said than done.

I wish you the very best. Hang on tight. This community is wonderful and people really care about each other.

13

I just tell people I have a neurological disease that effects my gait/balance, dexterity, speech, swallowing and vision. I was diagnosed with my ataxia eleven years ago and am 60 years young now, so I guess I'm use to it and it doesn't bother me that people are curious. Family and good friends know I have ataxia and still love me unconditionally...,ha! It doesn't define who I am as a person..., ;o)

14

I’ve had ataxia since 2008 so most people know, now…but it was a pain explaining ataxia at first. When I used just a cane less people asked then when I started using a rollator. It’s laughable how people must be afraid of the rollator and kind of now just avoid me or stay far away

The hardest part for me was really trying to teach my own family members. They couldn’t seem to “get it in their heads” and they’d say “well just walk over here”. They didn’t understand I couldn’t.

I understand that you are private and it ticks you off (I did too) but you get used to it. I consider it to bea part of being blessed with ataxia and I do consider it a blessing. I’m not in pain and it could be so much worse. Yes I do have ataxia, but it doesn’t have me!

15

Snoozy- Great advice! Runner- I wish you strength and guts. If you're having a gathering you're already there. Carry on!

16

When I am in a situation where people stare or ask me, I just say I have a neurological problem.

17

Be up front. Tell them you have ataxia. Most people ask because of concern, and most people near me have assumed I have arthritis. My close friends, I gave them the "full title", spinocerebellar ataxia type 6, most other people just ataxia. If they want further information I tell them "my brain is broken", and explain what is going on. People in the street who ask, ataxia is enough, and they say "oh!" or the equivalent.

I too am a very private person. I would be very happy if I didn't have to interact with people at all. But I do, and I cope. I started using a cane when I started to walk like a drunk; it was less embarrassing. It was also a warning to others that this person might start walking funny so take care! I bought a cane that was pretty. I reasoned if I need an aid, I might as well make a fashion statement, and people often remark how "nice" it is, and several other people with canes have followed my example. I have a couple of friends who use canes and when we meet we have "sword fights".

In other words, just because I find myself with a disability, there is no way I will not enjoy life!

18

Hi there Runner,

People will keep on asking questions when you keep up the knee injury:) Why hasn't it healed yet, go get an operation, go get a second opinion blablabla. THIS will exhaust you for sure. So spit it out straight forward: I've got cerebellar ataxia, my walking will get worse because it's a progressive disease. My small brain is shrinking. Google it, because it's a rare disease and I don't feel like explaining cause it's kinda complicated. And yes..there is NO cure.

That's it..GO for it:):)

19

My feelings about dealing with the "pride" issue

"You just don't understand what it's like...". I hear that a lot from people with ataxia on websites and blogs. Maybe, but my experience with family and friends is that it certainly isn't from lack of trying. Most importantly, it's not from lack of caring.


People struggle more with the if, when, and how much help to offer. Often, the strategy is not to do anything that might be perceived as a threat to one's effort at self-sufficiency. People with disabilities can be set in their ways or have their preferred routine. No one wants to unwittingly disrupt that, but we (disabled persons) can also be a pain to deal with. I'd like to say I make it easy by not being easily offended or set off by offers of assistance. I do ask for help more often now and have found people happy to be useful. Opening a door is a simple task for someone to do, but a big deal to me. I've learned a "thank you" will do.

rebellar ataxia (SCA) and being out among unaffected people, caused me to think about the "you don't understand" comment a lot. I used to think I was pretty sensitive to others. Having ataxia has taught me that while I don't have a clue about anything outside of my own view of the world, I don't need to feel badly about it. I do recognize there are many life experiences that aren't in a frame of reference I "get". But, in the past, I confused caring with understanding. Fortunately, I never looked searchingly into someone's eyes and uttered the words, " I understand", but now I understand that I didn't understand. I think back to my aging parents, friends with cancer, people in pain, a friend parenting an autistic child.

I was introduced to a couple at a party that included both friends and strangers. My friends all knew about the ataxia, but most of the strangers just ignored me or wondered in silence. Seeing my walker, persistent sitting posture and nearby helping husband, the man asked, "So Tammy, how did you get here?"(the disability, not the party). His wife was mortified that he would ask me how this had happened(whatever this was) and tried to shush him. I gave him a brief (I'm sure he was grateful) explanation of SCA and will remember him always. He was my hero for being direct. The takeaway was if that I don't "get" a given situation, I can ask; recognizing, of course, that not everyone is inclined to talkt's easy to forget that, while quiet on occasion, I'm a oversharer by nature.

20

Always such wisdom from you Schumant ! You should visit and comment more often:-)



I have found people to be grateful when I explain my situation. They do not want to be nosy, but they are concerned. Rather than have them look at me with that questioning look on their face, I just say" in case you wonder what happened to me…" and I explain briefly : the stroke, the ataxia, the vision loss, the tremors… It is up to me to say more or just keep it there. Most people are satisfied with a short explanation and we will go on to another subject. Some offer help, “any time you need a ride or anything…” Some want to know more and I do not mind telling them. We want to spread awareness to ataxia. So let’s spread it gracefully :slight_smile: