How completely do you discuss your physical problems with your family members, friends or acquaintences?

[jneilw51]

In reading through the posts on this site, with the exception of occasional mentions of spouses, parents and children, I have not noticed many people mention that they had discussed their physical problems with other relatives, friends or acquiaintences. In my situation, I suffered a severe right leg injury at about the same time that I began to notice my Ataxia symptoms, So, it became easy for me to pretend that my Ataxia symptoms had been a result of my fall. I have never been all that close to my relatives, and I never had many real close friends, so I am not sure that it would have been appropriate to try to make them understand my Ataxia. Nonetheless, I felt very relieved that I never found myself in the situation of having to explain to very many people the real reasons for my having to use a cane or a walker. I have been wondering if some of you might be hesitant to talk about your Ataxia with relatives, and other persons that you know, and what might be the main reason that you would avoid discussing your Ataxia with relatives, or with other persons who know you. I know that the things that go through my mind when I start thinking about telling someone about my Ataxia are that they probably think that I am looking for sympathy, or some kind of help from them, and they would be scared that they would not know what to say because they know so little about Ataxia. It also enters my mind that they might become afraid to go anywhere with me because of the risk that they might accidently cause me to become injured. At the very least, I think that they might want to avoid me simply because they would not know what to talk about with me. Does anyone else get those same feelings? If you do, how do you deal with them?

[Vion]

Hi, I took to social media since everyone of my friends and relatives are on it. I didn't have a great understanding of Ataxia so I attached the details of the website with my message including the charity details, this way they could read my message about what was happening and read about Ataxia at the same time plus make a donation if they felt the need. I didn't have a massive response but at least I found out which family and friends cared enough to respond and ask questions. I feel in illness you begin to really see who gives a damn and that matters to me.

I won't be sending them a Christmas card this year instead I will donate to Ataxia UK. 💃

[eileen200271]

Morning jneilw51. Yes, yes, and yes on all counts, lol. My husband has a gang of 6 friends. When I (😉😉) asked them if they could take him out for an hr; 1 calls for Dave most weeks, 1 takes both of us out every 3 month or so, 1 visits every 8 wk or so and I make him loads of cups of coffee. Not heard from the other 3. One certainly learns who yr friends are. And don't get me started on relatives😱😁. But on the plus side, our three children are very good to us. Also I told my fella that our son is positive for SCA6 (see previous posts!!). So we have all had a good cry and now life has gone back to "normal". Just have to get on with it really.

Best wishes, Eileen. 💙💜

[tedjohnson in reply to eileen200271]

Hi jneilw51

All illnesses are very strange and most of us don't really know how to deal with them eg Sorry to hear you have got cancer------and then what does one say?

If asked, I usually say I have got Cerebella Ataxia and suggest they Google it unless they ask more questions. As long as your close friends and relations show interest and understanding I don't think we can do anymore

Good luck and best wishes Ted

[february]

I don't really talk about my ataxia to anyone other than a few friends that I talk with through email who have similar problems, as they understand. Also, sometimes I share with my best girlfriend, as she asks about it. With others I've become a very good listener, as I slur my speech and at times it's just easier for me. I really don't talk with my parents about it, as they're elderly and I don't want them to bee worried about me. Of course, my husband has got an ear-full, bless his heart, as he's my very BEST friend! I have two adult children who ask me questions that I'll share with, although i don't want to cause them any worry. I guess I pick and chose depending on the situation. I think I'm like this, as it so hard to explain "ataxia" to someone that doesn't have to deal with it...,;o)