hkmarie1

I was diagnosed with spinocerebellera ataxia a couple years ago. It's not so noticeable yet...but will be down the road. It's a pretty serious disorder, no cure or treatment. When it begins it affects mostly your balance, hand-eye-coordination, speech...but progresses into affecting almost everything.... your can't walk anymore, barely be able to talk if at all, you'll have to eat with a weighted spoon...if you can still eat without being spoon fed.

It affects your cerebellum, brainstem,spinal cord, and muscles.

Right now, I'm healthy, go the gym everyday and in great shape, attractive, well liked.

I know that the right thing to do is to tell the one your dating, about something so serious. I'm not dating anyone right now. What if I meet someone I want to be serious with...I don't know how to tell them, when to tell them... I mean even if we're not serious (at this situation was reversed and I fell for a guy) and he didn't tell me until a year into or until we're serious...I might feel like he waited till I was hooked but I think I would also understand.

Another huge thing...let's say I meet someone, tell them, they don't care...they love me that much they'll work through it with me... great.. another bombshell. If we have children there is a 50/50 chance of this passing on...even if they don't physically have the disorder they can carry the gene to pass it on to their children.

There is the option for IVF. But I probably won't be able to physically carry a child (at risk for falling more so then a 'normal" woman). so they'd ALSO have to be open to IVF and a surrogate mother or adoption. There is also a treatment which can remove only this mutated gene but it is controversial and expensive....another bombshell...

I'm only 26, everyone deserves a chance at love. But I feel, who will love me know...at least the may until I tell them. I understand this would be a bombshell for anyone and would understand if they didn't stick around.

Short term or uncommited relationships might work for a little bit...but I want to be married, have children, be happy and live a full life with the whole white picket fence, 2.5kids, and aloving husband who adores me despite this fact. It feels so hopeless...if the person you were with know, man or woman, came to you and told you they had this what would you do? Be honest.


ps- there is no cure or treatment (as of now but there are advances in research...such as stem cell research but that is still new and unavailable). I can only live a healthy lifestyle and take vitamins and supplements.

Riverside MFT

When you are dating another guy, I would just wait for when the conversation comes up and then be honest with him. After you are dating, the idea of having children might come up. This might be a good time to let him know about your medical condition.

If you haven't told him within two months of dating (not two months of knowing each other, two months of dating). When you do tell him, make sure you are sensitive to his feelings. Let him know that he would not be insensitive if he chose to not pursue the relationship. You should also definitely tell him before any kind of sexually related activity.

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Brian, Marriage Counselor
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PBear

If they're not having sex within two months of dating, they have other issues!

If it was me, I think one option would be to let a conversation happen as a result of why you're taking the supplements or doing a particular exercise regime. It doesn't have to be a big serious discussion, but just a mention that you're doing it because you have this condition. After that, it's out in the open, he can ask questions or do research about it, however he wants to handle it. And if the conversation comes up about kids later, you can express some of your concerns then. Or if the conversation comes up about making things more permanent... Same idea. But at least it won't come as a huge surprise for him.

C
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Scannerguard

Good advice. . .I'd like to add to not worry about everything too much.

Just be careful - the 2.5 kids and white picket fence would actually scare off more guys than your neurological disorder. It would me. That stuff seems like nothing compared to that.

See how "normal" you are?

__________________
And maybe I seem a bit confused. . .but maybe, I got you pegged! Ha! Don't know what to do about those tossed salad and scrambled eggs. . .they're posting again. Scannerguard has left the building.

CoffeeTime

I will be completely honest with you. If I loved someone in that situation I would continue to love and be with them. I know many real life stories where the human heart triumphs, I've even met a woman whom was diagnosed with a life threatening illness. While a patient in the hospital she met her future husband! She survived by the way.

There is always hope. Spinocerebellera Ataxia is what you have, not who you are. I would let someone know when you feel the relationship is getting serious. If you meet someone who you communicate well with and can trust, you will have a better feel for how and when. Trust yourself with that.

BigToe

I don't suspect you have to tell them on the first date, but you certainly should tell them ASAP if casual dating starts turning into a more serious relationship. It will be easier on both of you the sooner you bring it up.