Hi everyone! I'm back again with another video and
Today's video is going to be relationships involving
spina bifida and I'm doing spina bifida specifically
video. So, uh a few days ago or about a week or two ago
probably now my friend - she has a Facebook page
for people to like give me topics and talk about in the
spina bifida video. And that was one of them. So, that is
what I'm doing today. Also, I did a poll kind of situation
on my Instagram. And I just asked what kind of videos
people wanted to see snd a lot of them said Spina Bifida
related. So, that is what I'm doing. This video will be split
into different sections. So, if you - because there are five
So, if you want to just look at a certain topic or if it's just
a certain topic that interests you more then you can do
that. Um, all of the topics and everything will be listed in
the description with a like time guide for you guys to
will be a longer video I'm gonna try to make it as short as possible but I beat
you to the top claw and there's a lot of time a lot to talk about I cannot speak
today so yeah anyway request videos down below if you have any video requests and
don't forget to subscribe on my Jesus don't forget to subscribe and follow me
on all of my social medias as well which will be listed below on at the end of
the video so let's go ahead and get started
okay now I have everything listed as far as every topic that I'm gonna talk about
I have it listed on the top right here so you see me looking over that would be
why so about the first topic is what is fun with it so I'm gonna try to kind of
explain it to you guys there are three types which I'll go over in a minute but
there are three types is fun definite and just like any other disability or
condition it does affect everyone differently so that's an important thing
to realize as well let's find out what it basically means where again it's
gonna affect everyone differently but basically in a nutshell kind of
situation it is basically where the spine and the spinal cord you're not
formed correctly and the spine does not the spinal cord isn't completely
protected with skin therefore it creates what's called a spinal sac which has
cerebral spinal fluid in it and that basically has all of the nerves and
everything because the back was not fully closed correctly to inform
correctly so that's kind of an initial what spina bifida is if you want any
other information I will include some links down below and also the exact
definition probably right here somewhere curious about the actual definition okay
- no it's the ones topic -
topic 2 is when do you tell your partner you have it and this is probably the
main point of the video but I do have a couple of things that I wanted to talk
about so the first thing is to start slow now this is gonna depend on from
person to person now your preference of when you tell them it's completely
different so it's gonna be completely different than who you know a different
person obviously everyone is different so it's kind of kind of depend on what
you want to do specifically and what works best for you in terms of when you
tell them but I would start slow I wouldn't because if there's a lot of
information to kind of take in all at one time so I would kind of ease into it
I wouldn't necessarily hide it which is my next point not to hide it but I I
would not just you know spit everything out at once because again it's a lot of
information to go through and the process especially when you know if that
person knows nothing about it it's a lot of information to kind of gather all at
one time so start slow you know don't don't rush
into it take things slow and you know pace yourself my next one is don't hide
it and I mentioned this a minute ago but you don't want to hide it because
ultimately you need to make sure that they are aware of it because if this is
going to be a long-term relationship you need to make sure that they're prepared
preparedness is probably the most important thing you know you want to
make sure they're prepared for what's gonna happen what may be extra medical
things you have to do because of it and how it affects you because it affects
everyone different so turn that to hide it if you can't you know your preference
of win now this is another big one because just because you know you might
want to tell some right off the bat doesn't mean somebody
else with it so it's important to not everyone is very comfortable with with
their condition as far as you know certain things and it may entail so it's
important that you are confident in your disability or condition whatever you
want to call it and also that you are comfortable with what you tell them no
this doesn't mean that you have to tell them all at once yeah you can tell them
certain things are comfortable with up until you know you get comfortable with
the person if that is your preference but it is very important that you know
what your preference is as far as when you tell that person you know don't feel
like you have to rush to tell them just do it at your own pace my personal
opinion would be to tell them right away but understand that does not work for
everyone so like I said you know you don't want to feel rushed to tell them
but my personal opinion would be to tell them right away so that they have time
to be prepared as the relationship goes on but that's not everyone's preference
and that is completely okay what is not okay is hiding it I don't agree with
hiding it or thinking oh you know I'm not gonna tell this person until years
later or months later I do think that it's something that they need to know
not right right away but it is something that you need to keep in the back of
your mind to tell them eventually because it is something that you know
like I said if this plan is to be long-term relationship that you need to
make sure that they are prepared my next one is encouraging to do their own
research now when I say this it means you know again it can be a lot to take
in at once and so you I would encourage them to look up certain things if they
can because I think you know them doing their own research they can do it at
their own pace they can look up certain things or not that they're curious about
or that you may not be able to explain it very well and they can get it in
of how they understand it you know they can do specific research that you may
not be able to do because you're not them you know everyone understands
things differently and so I think encouraging them even though it may be
scary I think encouraging them to do their own
research will help because again like I said they can kind of do it at their own
pace and find a way that works better for them in a way that they can
understand it so topic number three is help though understand so what I mean by
that is explain what the condition is and how it affects you so like I
mentioned earlier it affects everyone different not everyone is going to be
affected the same so it's important that you you know you need to kind of
understand and help them understand what your condition is specifically and how
it affects you because the more knowledge they have the better they can
help you explain things like extra things you have to don't need help doing
so if you need help showering if you need help getting dressed or getting in
your chair that sort of thing it would be a good time to explain not to them as
well again the more they know the more they
can help explain your level it was fine enough and I know some people may not
know this and say you may have to do a little bit of research to figure it out
because it is kind of confusing at least it is to me but it's important that you
know the type and the level of your of the defects that you have because that
way you can you can also better understand it but also they can
understand it a little bit better as well because again like I keep saying
the more knowledge they have the better they can help now we're going to want to
talk to number four topic topic number four is be prepared for confusion and
yeah be prepared for them being confused understand that your partner that if
this may be the first time that they're hearing about it and they may be
confused it's most likely that's going to happen and it's nothing wrong with it
they just may be never heard of it before and this is a
good time to educate them and you know educate them as much as you can and
again like I said earlier make sure that they can do their own research but it is
also important that you try to educate them as much as you can that way they
can help you and kind of get a better understanding of what may lie ahead
another one is answer any questions they have as honestly as possible again not
everybody is comfortable with answering certain questions like bathroom
situation or showering things like that those are my personal topics that you
can discuss later on but I do encourage you to be as honest as you feel
comfortable being because the more that you can be honest with them it helps
them prepare for what might happen later you know for example if he helped with
showering they can be prepared for that for when you guys move in together or if
something was to happen they would already know what to do because they
would be prepared next is or educate them as much as possible so again it
goes along with them being prepared if they're educated they're most likely
gonna be more prepared for things so I would educate them as much as you know
and what you don't know you can do your own research with now we're going to
move on to topic number this is a last topic of this video so topic number five
work together a relationship between two able bodied people is hard enough so
what you need to be patient you know like I said earlier and they may not
have heard of the disability before you know there's people that have never
heard it before and it's completely fine but you need to make sure that you're
patient you know if they ask a hundred questions at once you know be prepared
for that and be patient when it happens you know because they're probably scared
and have no idea what it is or maybe we just have just curiosity question that
happens you know and so try not to be too frustrated with it
try to be as patient as you can with them because it's an adjustment for you
as well for them so try to be as patient as you can don't get frustrated with
your partner they cannot take care of you right away they have to be taught
now what I mean by this is simply what I says if they've never heard of the
disability before they might not know anything about it therefore they don't
know how to help you so again it goes along with educating them I know I'm
repeating myself but they kind of all go hand-in-hand if you think about it you
know because if you explain to them and teach them you know how things that you
have to do differently such as help getting dressed or if you have a certain
medical routine such as medications you have to take daily you know a cat things
scheduled those types of things it's gonna take a little bit for them to be
taught that and for them to get used to it so we can be patient
you know they're not robots they don't come programmed with these things so
it's important that you're as patient as you can be and try not to get frustrated
I know what is frustrating but try to be patient yeah because they're learning to
it's an adjustment for you as well as it is for them so
just be patient next is communicate now communication is probably the key to any
relationship but it's also what if you're not able bodied and you know
don't be afraid to speak up you know if they're doing something that you don't
like or they're not doing something that you need done the correct way don't be
afraid to say something you know they may get frustrated or upset but at the
end of the day it's you that matters it's the it's you that needs to care not
them they're just eating you in it you know so in at the end of the day it's
you that needs the care and it's important that it's done right so that
both of you can be held as healthy and happy as possible so I hope these tips
helped you and I hope that this video helped you if you have any further
questions or anything that you would like a specific topic any video requests
that you have of a specific topic that you would like me to include in my next
video go ahead and leave a comment for me down below and I'll research
everything and it may I may just ear tradition but yeah so thank you for
watching and if you have any other comments questions or requests go ahead
and leave it below and I'll see you guys next time bye
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