Feeling alone
Hello everyone, I have just registered here: thanks for accepting me.
I have been diagnosed a couple of years ago and do you know what was, and still is, the first thought that goes through my head when thinking about the diagnosis?:
"Who am I going to tell now?"
Precisely because I am perfectly aware that I have no one around me who really cares about me. On the contrary, I am very clear about at least who I do not want to know and for different reasons: because I don't want to make someone sad and because I find the chatter that people make about other people's illnesses disgusting and indecent.
For a long time, however, I have been looking for an opportunity to at least share my diagnosis safely, because in recent years the very few people to whom I have confided it have made me regret it. Some have disappeared, some forgot it, all don't care. It is true that apparently one does not notice anything, and that is why I prefer to keep it a secret...however on a personal level I realise that I feel more and more alone because I do not feel like sharing such an important 'detail'.
How do you do it? What kind of relationships do you have? How do you interact with old and new acquaintances?
I'm sorry to hear this, and I can relate to the first thought so dang hard. Who to tell, why tell them, what's the point in telling anyone because they can't actually do anything about it, or worse they'll use it as a negative to insult or put us down. Incurable, but everyone's different & there are no set symptoms or course for the disease, don't even know for sure how it'll affect you. A whole jumble of confusion around who, why, and where to share. Do I tell work colleagues? What if they use it as an excuse to bitch about me? 'Oh did you hear Rory has MS, bet that's why they made that mistake last month', or the opposite they treat ya differently because they feel bad. etc etc. Trusting in people is really hard, you're super not alone in that aspect of this issue you're having. Aside from the people who I told immediately because they are loved ones that I knew would support me and I am incredibly lucky to have, I’m simply letting whims decide which friends I tell and when. If someone I like, old friends or family specifically (not new acquaintances because I don’t think it’s any of their business) asks how I’m doing I’ve taken to just being honest. ‘Not great, had a medical procedure/diagnosis that’s kicked my ass this week’ if they care they’ll ask more, or be a good friend in some other way. Some say ‘oh shit, what happened’, some have just gotten awkward and stopped talking to me (these ones I don’t tell), some have been like ‘shit that sucks, you wanna hang out anyway?’ and these ones I don't tell immediately but I wanna keep around because they know somethings up but they’re here regardless. I don’t have enough experience with this disease or the long-term impact it’ll have on my social circles or family to have a real valid opinion, but I do know that oftentimes when I’ve felt alone in the past finding people who understand where I am now made a massive difference. If there's no one currently in your corner finding people who already understand MS and are a part of that community is where I’d start looking.
I tell everyone. Even the taxi driver. i am not drunk taxi driver . i have Ms. Educate people so they might treat you .me or next person better.