On finding your tribe
Getting diagnosed with MS in 2023, especially being new to this country, was a wild ride. Everyone had an opinion: other patients, friends of patients, worried parents—it was a mess of mixed messages. 'You'll lose your walk,' 'try natural stuff,' 'your job's at risk', ‘don’t tell your in laws, they’ll get more concerned that their new bride is diagnosed’—it never stopped. Some people were just plain insensitive, making me freak out even more.
Basically, I learned the hard way: your "tribe" matters big time. Forget the noise. You need people who actually get it, who listen, give real hope, and don't dump their fears on you.
Find your people, the ones who make you feel like you're not alone in this. That's the real deal.
What are your thoughts on this and how did you manage?
I was afraid of dealing with everyone else’s preconceived opinions and unsolicited advice so I didn’t tell many people. I’ve come to realize most don’t know a lot about MS unless they have been affected themselves. The others “know somebody” who has/had it and don’t realize it never affects everyone the same so they base their knowledge of the condition on the one person they know. It’s hard to explain and even harder to understand and I just didn’t have the mental bandwidth to try to do that over and over. I didn’t need my family worrying, I didn’t need my friends trying to “help”, I didn’t need my job looking at me funny… I needed the guidance of medical specialists who could help me understand my specific situation and learn how to handle it. I would’ve loved to have had more support and understanding from my family and friends but I couldn’t manage their emotions and expectations around this while trying to navigate my own. I’ve found people online that can understand so I don’t feel so alone. And I of course have my husband and the few people I have told. They are all understanding of my boundaries (for the most part) and let me navigate this as I see fit. I learned the hard way early on that once you tell someone, you can’t take it back. And you can’t control who and what they tell others. I didn’t want to be anyone’s piece of ill-informed gossip since most just like to have something to talk about but no one would take the time to properly explain. So to this day, I keep my diagnosis between me and my medical team and the handful of people closest to me. I’m sorry you have had to manage other people’s feelings and opinions. I can only imagine how exhausting it must be. I am typically an open book so it has been hard for me to keep this to myself as much as I have so I guess we choose what kind of hard we will live with. There’s no good answer for any of it. I just needed space to figure out my own feelings about it all first before carrying everyone else’s. The best advice I could give for your situation is to sit down and figure out what you need from others and find a way to place boundaries that support that. If they are doing things that cause you more stress, find a way to express that and tell them what you need from them instead. I can’t imagine telling someone in your position some of the things you’ve heard. Many are very misinformed and insensitive things to say. I would advise you to step back and evaluate those relationships. If they’re passing acquaintances, maybe dont discuss these things with them. If they’re someone close, try to educate them when you feel up to doing so. It’s a lot on top of dealing with things that are already a lot. I hope you’re able to find what works for you so you can have the support you need and not be constantly carrying everyone else’s fears and opinions. Sorry this was so long! I obviously have a lot of feelings about the matter. Be well, friend.
I’m not good at talking about my feelings and how I’m doing but I do have a handful of friends that I can trust to be there if I need them. I get a lot of try this and just think positive thoughts and you will be fine