No matter where you go, multiple sclerosis (MS) tags along. That’s true even for big events – a friend’s wedding, a high school reunion, or a gathering with extended family. It is a disease that affects many aspects of your life and can profoundly affect how you choose to answer that predictable question “How are you?”
Although there is no getting rid of MS for your big event, planning in advance and finding a way to navigate around your condition will increase your chances of having some fun.
Here are a few steps to take to make sure that MS doesn’t steal the show.
Research the location. Don’t be shy about calling a business or facility to ask about accessible parking, valet parking services, or the best way to get to your final destination within their property. Starting any event with a long, unnecessary walk makes it harder to enjoy yourself during the event.
Bring mobility aids. If you often use a cane or other mobility device during a typical day, or even just when your MS is flaring, going to the big event isn’t the time to tough it out and go without. Investing in a cane with some style can pay dividends when it comes to feeling confident when you go out and socialize.
Rest as needed—before, during, and after. In the days before the event, make sure that you get plenty of rest and avoid fretting over minor details. During the event, give yourself permission to take a time-out before you feel completely overwhelmed or overheated. After the event, allow yourself time to recuperate. Schedule the downtime on your calendar.
Here's an example. I attended an outdoor wedding last year at a winery. The only building that had air conditioning was designated as “wedding party only” facilities. I gathered my nerve and asked to sit in the building after the ceremony and before the reception to keep from melting. People were very accommodating, and I was able to continue having fun when I rejoined the party.
Dress comfortably. It is tempting to dress extravagantly for a big event where you expect to see people you haven’t seen for quite some time. But if you dress more comfortably — particularly wearing sensible shoes that don’t require much thought while they are on — you can spend more mental and physical energy on having a good time.
Stay hydrated. Going to the bathroom frequently is a hassle, I understand. But you want to avoid dehydration, which feels awful. Drink plenty of water in the days leading up to the event and avoid drinking too much alcohol, soda, or coffee at the event. This is one way to support your brain so that it has a better chance to support you.
Engage others in conversation. People generally like to talk about themselves. Fortunately, there are many more things to talk about other than “What do you do?”. Here are some alternative questions I found in the Harvard Business Review: What excites you right now? What’s the best thing that happened to you this year? Who is your favorite superhero? Is there a charitable cause you support?
Leave the guilt at home. No matter how much or how little MS has changed what you thought your life would be, it’s way too easy to feel guilty about it. That’s okay, really. Hardly anybody honestly feels like everything about their life is just as they had pictured it might be years ago. The best journeys never conform to straight lines.
Remember that you make a difference. There’s a good chance that if you are reading this article right now, you are part of the HealthCentral online MS community. You likely share details of your life with MS — your concerns, symptoms, treatments, victories, war stories, and more — with your MS friends. If asked the question “What do you do?”, respond confidently by saying that you use your experience living with MS to help others affected by the disease, as they in turn help you, too. Remember that you are never alone when you take the MS community with you to the big event.
See more helpful articles:
How I Rebuilt My Self-Confidence After an MS Diagnosis
The Many Shades of 'I'm Fine'
How to Accept a New Reality: If You're Medically Retired With MS