Real-life Advice for Dating With MSby Jackie Zimmerman Patient Advocate
Dating these days can be a roller coaster, and if you add multiple sclerosis to it, you might feel like you’re strapping into the front seat on Space Mountain, whipping around curves in the dark. But it doesn’t have to! After my diagnosis with relapsing remitting MS at 21, I learned a lot about how to brave the world of dating with a chronic condition, but also how to take care of myself in the process. Keep reading for some of my most valuable tips. Plus, I included some thoughts from my friends who have also found love while living with MS.
Be Honest With Yourself
The first step to finding a real and connected love with someone is to start by being honest with yourself about what you’re really looking for right now. Are you just wanting to have fun? Are you seeking your soulmate? There’s no right or wrong answer, but this conscious acknowledgement can be crucial to how you decide to interact with your future dates. And, yep, this is true for dating whether you have MS or not.
Real Talk: “If you are dating with the express purpose of finding a life mate, I strongly suggest being open about it in the early chatting phases. For some people that might feel like you're 'putting too much' on someone, but if they're going to be scared away from it, they're not the person for you.” — Amy, Sterling Heights, MI, diagnosed at 28
Tell Your Partner ASAP
One of the most common questions among MS daters is, “When do I tell a potential partner about my diagnosis?” The answer is sooner, rather than later. The only thing you have to lose is someone who can’t support you when you need them the most.
Real Talk: “There is no magic formula to sharing your life, just feel safe and comfortable. Not every relationship will last long enough for this 'individual magic formula.' The best person to share your diagnosis with is the one who is willing to listen and understand.” — Gustavo, Guarulhos, Brazil, diagnosed at 24
Be an Over-Explainer
Most people have heard of MS but aren’t well versed on what it means, and this works in your favor. Be sure to explain what MS is, but focus more specifically on how it affects you. Are you dog-tired by 5 p.m. on weeknights? Is it difficult for you to walk long distances? Or, do you mostly go symptom-less until a surprise flare pops up? If this is their first time up-close-and-personal with someone with MS, you have a great opportunity to educate and also show them a very different perspective on the condition. Chances are, if you’re positive and hopeful, they will be too.
Real Talk: “I would be upfront about it and be clear that your MS looks like “x”, but that it is different from person to person. I know that’s not always the easiest, but the worry comes from the unknown.” — Lindsey, Portland, OR, diagnosed at 25
Leave the Door Open for Questions
Once you’ve shared your diagnosis with a new person, it’s possible that they may have some questions and the best (and most brave) thing you can do is to be an open book with your answers. This allows you to control the conversation around your MS and doesn’t leave your partner to the mercy of whatever they find on Google. Instead of hiding, give your partner and yourself the permission to ask anything.
Real Talk: “MS isn't a death sentence. Does it suck? Yes! But it also isn't something you can ‘hide’ long.” — Carly, Detroit, MI, diagnosed at 26
Plan Around Fatigue
You know your limitations and the consequences of going over those limits. Plan dates that are fun, but that won’t wipe you out. If your new boo plans something that sounds like a blast, but you’re worried about looking lame if you say no, imagine how lame you’ll feel if you’re napping in the car ride home. Save the high-energy excursions for later in your relationship, so you can focus on getting to know each other as opposed to counting down the minutes until your head hits your pillow.
Real Talk: “Some days I can do it all—work, errands, juggling family and fun. But I make sure to schedule an equal amount of time to rest; the energy I ‘borrow’ I have to put back.” — Lindsey
Embrace Your Limitations
Agreeing to do things that are difficult for you is just silly. MS is something that is going to be with you every day so if you have limitations because of it, it’s best to share those limitations with your partner-to-be, that way you can work together to plan things that you both enjoy (or have “Me Days,” where you go your separate ways and do whatever you like). Not only will you have more fun on your outings, but you’ll also be able to ditch any guilt you feel for having to sit anything out.
Real Talk: “Be prepared to accept some limitations. Sharing your fears and uncertainties is the key to engaging your partner in your daily life. “ — Gustavo
Be Honest About Bad Days
Holding back information can lead to fear, guilt, and even resentment. all of which are sure to squash any budding relationships. Sharing your needs with your partner is an opportunity to invest in your relationship in a vulnerable and meaningful way.
Real Talk: “An open line of communication is necessary to get over speed bumps that come up due to the disease. If you can have that open line of communication, you will grow closer together and can work together through the struggles you may face.” — Randy, North East, MD, diagnosed at 30
Help Them Help You
If you need something from your partner, let him or her know. When a relationship is new, you’re both doing your very best to learn about the other person and how you can support each other. Give your new person a leg up and tell them exactly what you need when you’re fatigued, flaring, or just need an extra set of hands at the grocery store. The people who are sincere about helping you will appreciate the direction and will be more equipped to support you when you ask for it.
Real Talk: “My wife has MS, and something that has helped me support her is to know where her energy is at before I get home. We do a 1-10 check-in, 1 being lowest energy and so on. This helps me takeover when I arrive and make sure she can get the rest she needs.” — Jason, Lindsey’s Husband
Seek the Silver Lining
Your abilities may change over time but instead of focusing on what you can’t do anymore, redirect your thinking to the new ways you can enjoy things with your S.O. When I asked my husband how we’ve altered our experiences together because of my MS, he said, “I don’t think we've had to alter anything except for the better! We get better seats at concerts, better parking spaces, and better campgrounds at festivals!” Sometimes the things that you think hold you back, actually open you up to better experiences!
Real Talk: “I used to be really discouraged by date ideas that felt out of my reach. But what I didn’t realize is that by knocking off “generic dates” that may drain me, I forced myself to be more creative in planning, and I’ve gotten to do some really cool things because of it. Who goes glass-blowing or to slam-poetry readings on first dates? I do.” — Anna, Savannah, Ga, diagnosed at 22