Late onset Freidreich's Ataxia and relationships

[PurpleFingerNinja]

My brother has normal onset FA (symptoms starting around 8 or 9 years) so I grew up knowing what it is but being the "normal" sibling. I began to develop symptoms after turning 30, by which time I was already a mum to 4 kids and in a long term relationship. Late onset being more rare means that the only people I know/have been in contact with knew they had FA well before entering into a relationship so I was just hoping there would be others out there who might be open to chat about some of the more "adult" issues I'm having with transitioning from a typical intimate relationship to, well, to not a right lot any more if I'm being honest (which is entirely me just not feeling sexy rather than him seemingly to lose any interest).

[BrettDarby]

I haven’t even considered your question, but just wish to say that I’m in a similar boat, I was diagnosed with FA at 30 and am married with 2 children. With hindsight I can see that I’d been going downhill since my early teens

[PurpleFingerNinja in reply to BrettDarby]

Yeah, I noticed symptoms when I was 33 but looking back I think they started in my late twenties.

[12monkeys]

I was 37 when I first had symptoms which ended up being Cerebellar Ataxia not FA but I’m sure the relationship impact would be similar. It took lots of conversations between me wife and I before anything could be addressed intimately. It was so hard for her cause I felt like a completely different person, the way I moved, touched etc which was so strange to her as it at first didn’t feel like I was the person next to her. We worked together, lots of conversations and tried to ensure there was no pressure from either one of us, just tried things and instead of feeling embarrassed about the outcome wasn’t successful just have a giggle and try a different way. It takes time and communication between the both of you. Just remind that ur still the same person inside just outside is a bit different but fun can still be had, good luck 😉

[BrettDarby in reply to 12monkeys]

Well said! I’ll show that to my wife

[12monkeys in reply to BrettDarby]

I think it’s important for us as the sufferer to be aware that no one knows how hard it is for us but also we don’t know how hard it is for others living with some who is ill, we can’t appreciate each other’s perspective as a we don’t live in each other’s shoes. Communication is key and respect for everyone’s situation, it takes time but it’s worth it

[BrettDarby in reply to 12monkeys]

Something that I concluded too. It’s awful to write this, but I shy away from someone I consider “worse” than me, so how do the non-disabled feel about me? At least with forums we’re all equal

[Ph27 in reply to BrettDarby]

I know what you mean Brett, I've always considered myself a non-judgemental type. But defo have a problem liking myself now I have ataxia. This has made me think maybe I've secretly been judging others all along but didn't want to admit it.

[BrettDarby in reply to Ph27]

It’s like racism, possibly. I’ve always considered myself tolerant but am I really? I mean it’s impossible to emphasise without actually being it, whatever IT is, black or a certain type of disability etc.

[PurpleFingerNinja in reply to 12monkeys]

Thank you for your reply. Our issues are very much the other way round. He has no hesitation trying to set things in motion as it were. The problem is very much me not feeling it. I feel awkward and clumsy and generally not sexy. The fatigue aspect makes it difficult to actually "do" much so I end up just feeling like an unruly sack of potatoes.

[BrettDarby in reply to PurpleFingerNinja]

“sack of potatoes”—that phrase has a notoriety in my household

[ww-wibblywobbly]

Hi, I felt completely unattractive for many years and so unsexy. The problem wasn't my husband, it was me and how I felt about myself.

With time we have managed to work through these issues together by talking and going gently . also Didn't help that I'd just gone through my menopause at the same time that my illness took hold!! Tbh positions etc are limited and fatigue is a big problem but pleasurable times are still very possible.

[PurpleFingerNinja in reply to ww-wibblywobbly]

Thank you! Thats very much my issue (not menopause, just how I feel about myself). I suppose I just feel like the outward symptoms of ataxia are just completely at odds with how I imagine myself as sexy or alluring. Hopefully I will manage to get my head round it all sooner rather than later. X