“I like coming to KADEP because everyone is so nice. I have lots of friends here, and we have so much fun. It’s great to get out of the house and enjoy time with other people.” — RYAN, King Adult Day Enrichment Program (KADEP) client
Prepare a response ahead of time. Having MS can feel isolating at times, but it’s important to maintain social connections. If you’re concerned about having hard conversations, and it’s holding you back from socializing, take some time to prepare a response before you’re in front of the person. For instance, if you are worried that everyone will focus on your MS and ask too many questions and you just want to enjoy an outing where you aren’t talking about it for once, you could start the interaction by stating that today is meant to be a fun outing and not focused on MS, you’re feeling fine today and you’d like to save a more in-depth update for another day. Knowing that you’re going to start with that could give you the confidence to hang out with friends in the way that you want. Or is if stresses you out when people want to share the latest “miracle cure” that they read about on the internet, you can have a standard statement that you’re working with a great team of doctors who keep you up to date on the latest research, and then change the topic. The key here is anticipating what might stress you out and preparing a response in advance.
Set realistic expectations. People generally respond really well when the right expectations are set in advance. When making plans with someone, you can set the stage by explaining that you are genuinely excited about seeing them, but you know that your energy level (or pain level, or whatever else might come up for you) can vary from day to day, so you’d like to set the expectation that you may have to cancel or change part of the plan. You could even discuss a back-up plan, something that requires less energy or can be done in a more flexible manner (timeframe or location). If you know that you will need a rest between activities, build that into the plans ahead of time and protect that for yourself. You will enjoy the day more, and your support partners will too.
Let people know how you like to be checked in with. Whether you want to be asked about how you’re feeling or you’d rather be the first to bring it up, tell your support partners how to support you. Tell them if the words they are using (or might use) cause a negative emotional reaction that could be avoided. When you’re not feeling great, let the other person know whether you’re looking for a solution or if you’re just wanting someone to sit in the muck with you. Most people want to do what is helpful, but they may not know what is helpful to YOU. And there will always be people who can’t seem to follow your requests. Give them the benefit of the doubt, understanding that they are probably coming from a place of love and caring even if their intentions aren’t shining through.
Online options. If you’re having trouble with social connections in-person, consider all of the options for meeting people online. There are many forums and programs that allow people to connect over a shared hobby, interest, or lived experience. Some options to check out: Discord, Twitch, Facebook, and online games. Many of these have both vocal and text options to communicate. The key here is to find something that allows you to talk to other people in real time. When checking out a new group, take a moment to consider how the group makes you feel. If you aren’t benefiting from the group, you can always leave.
