I've been a little MIA from social media lately, there are several reasons for this, it can be difficult working with HD and then trying to deal with what's happening to daddy, and then blogging about it. I can never switch off and get away from HD. One of the main reasons for my lack of interaction on social media is all the negativity on it.
I have several social media pages with work, the blog and my personal accounts. I am a member of several HD community groups and then have my friends etc posting on my newsfeed.
Most of the time it's relatively positive, but i have been seeing a lot more negative comments, especially to those sharing their HD story.
We worry about people's mental health so much, especially now due to Covid-19 but yet we still have those keyboard warriors.
In my opinion, which probably means very little to people, but ill share it with you any way we all need to settle down and look at the bigger picture.
Every country or state (America) have different guidelines and rules around HD and the facilities they offer, each Dr and facility works differently. Just because you have something in your area/ country it does not mean another person has the same services. Your experience may not be the same as someone else. This does not mean one person is wrong or right. When it comes to what we experience in life, i feel like no one is wrong or right.
If you choose to have a child naturally and are at risk of HD, that is your choice. If you choose to go through PGD then this again is your choice, and if you choose not to have children this should not be a problem for other people.
You may not agree with someone's life choice but it does not give you the right to attack another human for their choices.
This goes for their experiences also, i had a horrible experience getting tested for HD and this resulted in me backing out of the process and not getting tested. Other people have had extremely positive experiences, and i am very happy for them! If anything i may be a little jealous.
If i share my experience and tell you that the genetic's Dr ripped me apart, and ripped my life choices apart, it is not your job to tell me i am wrong!
I felt the feeling i felt at that time, and no one is right or wrong for the feeling they feel!!
If they are a complete Karen and overreacting then, that's a different story. (Please do not come at me for using the Karen reference - i do not feel it is a racial slur!)
It is extremely hard going through this HD journey, it is even harder doing it alone! Trust me i have!
We need to lift each other up and support each other. Share our experiences and help others coming behind us, we won't all have the same experiences and encounter the same situations. That's okay!
If you disagree with someone, listen to their side of the story and have an open mind. If you have nothing nice to say, say nothing!
This goes for real-life situations also, stop asking people when they are going to get a boyfriend, or if a couple is together a long period of time, when are they getting married or the most insensitive one, when are you have children. (Is this just an Irish thing?) You don't know is that couple having problems conceiving. Or like some of ur HD people, can they have children or do they want to with the genetic fate in their family? Have they made the choice not to because of there genetics?
Personally, i don't know what is worse, caring for dad, or being at risk! Let's be fair it all sucks, i wish my dad wasn't sick and i didn't have to worry about my future.
If someone talks a lot, they don't need to tell them this, if someone has an annoying laugh, they can't exactly ask God for a new one! If someone isn't strong enough or skinny enough, or too skinny. Mind your own business!!
We all have our annoying traits, we all have those traits people love about us and those traits people don't like. How does this sound, if you don't like something about someone, why are you their friend?
Don't get me wrong i talk a lot!! My friends and family know this, and joke with me about it, but when comments start getting malicious, this is when it needs to stop!!
Stop putting people down an attacking them for their views and beliefs, especially when it is something you know nothing about. If someone has a different view to you, who are you to say who is wrong.
The number of strangers, or people who don't know me very well ask me
have you not been tested yet? When my response is No, they proceed to tell me why i should be tested and its what they would do.
Okay, Jim, that's great you have that decision made for me! (Don't know who Jim in, is there a Karen version for a man)
In fairness my friends and i have talked and they have told me what they would do, some people would tell me they couldn't get tested, they wouldn't want to know. I don't mind my friends telling me their opinion. If you can't tell me 5 facts about my life that cant be found on social media (good luck) then you shouldn't be telling me if i should or should not be getting tested for a disease that will change my life.
Well, this post took a dive for the worst, but what im trying to say while rambling, is that we all need to take a serious step back and realise that the world and people init are sensitive.
I totally agree with tough love and finding the positive in a situation and the solution! Im talking about how we talk to others, not giving people sympathy or empathy.
We care so much about different groups of society and that's great! It's amazing the world is opening their eyes.
But as a rule in general, let's be kind, spread kindness and love and stop for a minute and ask, how are you?
During the lockdown, we went out to our gardens and front doorsteps to clap for the NHS, we rang our neighbour and asked did they need anything from the shop and we slowed down in general.
As the world starts to open up more and more, i think people need to remember how concerned we were about our friends, family and neighbours 3/ 4 months ago.
We love our family and friends, most of the time (joke).
Treat others how you would like to be treated!
Don't say something to someone, you would not want to be said to you!
Stop and think about what you are about to say and how that makes the other person feel.
If it starts with, 'No Offence' it probably is going to offend the person you are speaking to.
So here's the warning, i will be unfriending, unfollowing or leaving groups that have turned into a bitch fest. I can't have that negativity in my life, and to be honest i don't want it.
I want to lift people up and make them feel better about themself!
I hope you do too.
Who has just read this post, and took it as a lecture from some tawt of a 27-year-old?
Who has just read this post and thought, yes we need more kindness in the world towards everyone? I will continue to ask my friends, family and neighbours how they are. I will continue to compliment people, and listen to their story (or read) and keep my judgement to myself.
We may have our own opinions, but we don't need to share them if they are negative and attacking.
I was mortified to see a young girl attacked for sharing her HD story and honestly since i read those comments and seen the backlash, it has really broken my heart.
Obviously, i am not taring everyone with the same brush!! Its something i personally want to improve on, asking my friends how they are doing and taking an interest in their life! Commenting on peoples pictures or posts sharing love and encouragement!
Let's go back to the level of caring we had during the lockdown.