As a single childless woman over the age of 30, I’m often probed with “well-meaning” but annoying questions such as ‘when are you going to married?’ or ‘when are you going to have kids?’. I mean that’s what you’re supposed to do right? Find a mate, get married and have kids. But honestly it’s not that simple. If you thought the dating game was rigged before, try dating with myasthenia gravis (MG).
There are some women who had partners prior to diagnosis and stick with them through it all. Then there are some who’s partners couldn’t handle the journey and left them. But for those single snowflakes like me, the pressure to secure a good mate is on. How does one actually go about dating with myasthenia gravis?
Having “the talk”
How do you tell a guy (or gal) that you’re crushing on about your chronic illness? Depending on where you are in your chronic illness journey you may not be an open book. I recall not telling anyone but my closet friends and family (so like 5 ppl) that I had myasthenia gravis.
It was a secret. Have you ever had to tell basically a stranger your most sacred secret?
You’re revealing one of the least likable traits about yourself. I tend that save those for after I’ve sealed the deal but when dating with myasthenia gravis, I’ve found that laying the cards out on the table upfront is the best policy.
Explaining the Illness
After you break the news, (if they didn’t ghost you) you then have to explain everything. How it works, how it impacts you, what they should do in case of xyz etc. Just thinking about “breaking in” a new partner is exhausting.
Some will run for the hills and good riddance. They couldn’t handle the spoonie life. This allows you to weed out the weaklings and find the needle in the haystack that’s worthy of dating.
But after a few have ghosted you, it can be cumbersome to want to continue to try dating with myasthenia gravis. Who wants to continue to put expose themselves? That’s extra stress I don’t have time for.
Awkwardness of Dating with Chronic Illness
They say you laugh to keep from crying. If that’s the case, dating with myasthenia gravis is my personal form of comedy. Imagine being out on a date with a guy. Everything thing is going perfectly and then a flare up strikes.
You’re gazing into each others eyes (*cue sappy love song*) and then your eyelid starts to droop. Or what happens when you’re mid conversation and your speech starts to slur. Oh and nothing says sexy more than choking on the appetizers.
Thinking of all of the things that could go wrong on a date (even with a partner that knows about your illness) can be stressful. Even though I’m chronically ill, I just want to have a normal fairytale date with my prince charming like every other woman. Nah mean?
Fatigue
Let’s say you’ve finally struck gold. Your partner is cool with the diagnosis, understanding of the symptoms and has been great at learning information about myasthenia gravis (or whatever your illness is). They decided they are in it for the long haul.
But actually dating becomes the issue because of the chronic fatigue. It’s date night but you’re too tired because you went to work today or because you took a shower today. You have to postpone again.
Even though they are understanding, there is guilt that accompanies having to disappoint my loved ones. How many times can you blow off date night before bae chucks the idea of ever having a date with you? It’s not fair to them.
Sexy Time?
Intimacy is a big part of a relationship. Thanks to my prednisone weight, I’m now having to put aside my own body criticisms and pray that my medications haven’t completely depleted my drive while making sure my energy is up and symptoms are down.
If I didn’t have energy for date night, do I really have energy / spoons to do the do?
Easier to Be Alone
Chronic illness can be a burden on the spoonie on those around them. So it’s wise not to enter into a relationship haphazardly. Rather that stress out trying to manage all that comes with dating with myasthenia gravis some resolve to live life devoid of any romantic attachment.
If you don’t date, you don’t have to worry about all the things that go wrong. You wont get attached and then have the wind knocked out of you in disappointment when they ghost you.
But is that really the answer?
I’m not a dating guru by any means. If I didn’t have bae, I’d probably be one of those folks who believe that it’s easier to be alone. But I reached out to a few women on social media for some tips on dating with myasthenia gravis:
- Be Upfront about your illness. If the sucker is going to leave, it’s better they do it sooner rather than later.
- Plan for activities. If I know I have a date coming up. The week before I’m saving all my energy for it. Sometimes flareups can’t be avoided but do what you can.
- Accept the love and help. If someone is willing to come into your life and ease your burden because they care for you, let them. Don’t be too proud and push them away.
- Be creative. Learn to find new activities and hobbies you can share in together that are spoonie friendly.
- Love yourself first. Ok I threw this one in here myself. I know alot of people who suffer from low selfesteem as a result of chronic illness. So you may be willing to settle for less than just because someone is willing to “put up with” your chronic illness. Nope! If you love yourself, you will set and keep standards so that anyone who is in your life still values you – illness or not.
Who’s ready for some loving? Check out this video on what’s it like dating a spoonie.
Danielle
Beautifully said! As a fellow single MG’er in my thirties, I can relate to your experience. Thank you for sharing your journey. ❤️
Paul
I am a 66 year old Male with MG. Diagnosed in 2001. It has been no picnic, but I am surviving.
Morg
PaulHi Paul! I hope to one day be able to have a similar testimony. Standing tall as a warrior in my 60s. Thanks for stopping by and reading.
Gordon
Morgan, wow. Talk about hitting the nail on the head. Thanks for sharing what is a huge issue for those of us with MG. I’m a male, 63, living in NYC–the ultimate “walking city.” (At least before covid.) I last tried dating two years ago.
I had to explain to my date that we would be taking a cab for any distance over 3 blocks. As for restaurants….I needed one very quiet, so my very weak voice could be heard.
As for internet dating profiles: well, most people like those long walks on the beach, hiking, mountain climbing. 🙂 Me, my “hobby” is napping to recover from work. (I have a desk job; it’s the commute that knocks me out.)
And Paul, I am roughly the same age as you, and was diagnosed about the same time. And yes, we are surviving!!
Morg
GordonHi Gordon! I love that you’re still open to finding love and dating with an illness that makes it very difficult to do so. Hopefully once COVID is over you can get back out there. P.S. As a woman, I’d take a cab for places over 3 blocks as well because these heels are meant for looking good, not walking around lol
J
Teenager here, not very surprising that after being diagnosed with MG that we first think about how our love lives are going to be. Symptoms aren’t that pretty, both recovery wise and looks. But reading this article does give me some hope for a normal-ish life. Oh well, normal is overrated and boring anyways. Why try and pretend to be it while having the choice to live a truthful life.