Meet the Monsters

Romantically speaking, MSers fall into one of four categories: Happily married, in a complicated relationship, happily or resignedly single, or single and looking for love. Separated from my husband for nearly a year now, I fall into the last category.

A recluse by nature, I have opted for online dating sites as my source for the quest. I’m a 55-year-old cripple treading water in a sea of able-bodied potential suitors that include heavily tattooed old salts photographed astride their Harleys, businessmen, artists, and tradesmen. My profile consists of a wry little essay about my taste in music and film, gardening and writing. Nowhere do I mention having Multiple Sclerosis.

Determining when to reveal my disability has been a slippery slope. Once email contact is made, I generally stick to the practice of omission unless my gut tells me to put it to a guy forthwith. When I do fess up, the reactions are illuminating and sometimes maddening. There’s a curious little kid inside all of us, and with that comes a sometimes bewildering display of blundering judgment calls people make whenever and however they learn that I have MS. Much like the child who, upon discovering a hornet nest, proceeds to poke it with a stick. 

The most common questions I get are these: 1. Are you wheelchair-bound?  2. Are you able to have sex? Since I walk with a cane, I answer no to the first question, but it sets my teeth on edge. It might be a fair question, but to my mind it is a bit of a cheat, as though impatience has set in and he doesn’t want to wait for a face-to-face meeting to find out. As soon as disease is on the table, the focus shifts from my intelligence, charm, and wit, to my body and how it functions. This shift of perspective takes the gauze off the lens and turns a romantic comedy into a carnival documentary in which I am recast as a sideshow freak. Needless to say, I feel dehumanized. 

To the question about sexual function I respond by abruptly ending the conversation. It is another, more grievous cheat. Besides being insufferably inappropriate, it could indicate this person’s prime motivation for making contact. And yet, disturbingly often, a man who is too classy to commit such gauche missteps does not open doors for me, help me with my coat, or offer me his arm while walking me to my car at the end of our first date. All of these glaring faux pas awaken my sleeping monsters. My inner ogre called MS is not a lone cave-dweller; it lives with a mostly even-tempered spouse named Rational and several rambunctious children by the names of Ego, Indignation, Smart-ass, and a toddler called For Cryin’ Out Loud. 

Recently I reached out to a male MS buddy to ask for his insights, specifically about the unchivalrous behaviors I’d experienced on these first dates. He told me it is the Women’s Movement that has Baby Boomers all befuddled. Men are so afraid of insulting us that they err on the side of caution. But, my friend told me, here’s what you can do: On your next date, simply reach out for his arm and he’ll latch right on. And when you approach an exit together, lay back and allow him to get there first, he’ll open that door for sure. All a man needs is some gentle encouragement.

I took my friend’s advice and I’m happy to report that it worked. My inner monster family cave is abuzz with good will. I look at men afresh now, as people who are as self-absorbed and unsure as I am. Being generous and sympathetic by nature, I’m more than happy to give a guy a leg up in the chivalry department if it means he might give me one on our way out the door. Not only do I appreciate a man’s arm to steady myself and a door opened for me that might be heavy and throw me off balance, I sometimes really need this kind of help, and to get it, I must develop a way of soliciting it in diplomatic ways. And, if all else fails, nudging myself into a helping mode takes me out of my body for a moment and reminds me that giving is a worthy substitute for getting whatever it is I need or want. 

Managing a disabling and unpredictable disease forces me to live in the moment, and that surely has its upside. But one residual effect is selective amnesia. I got so wrapped up in grumbling about the lack of understanding and compassion among the able-bodied community that I forgot to remember a time when I was one of them: Strong, self-possessed, seemingly invulnerable, clueless and cavalier about the disabled among us, and feeling truly like an equal in the game of gender politics.

Now I possess the advantage of having been in both worlds. I can do something they can’t: Imagine what it’s like to walk in their shoes.

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18 comments on “Meet the Monsters

  1. chloesmommy says:

    I personally wouldn’t touch online dating. There are so many face to face ways to meet potential partners that would cut out the rejection & facilitate honesty & not waste your time.I have hooked up with a lovely man I met at Starbucks. He knows the score on me & is not intimidated by it. He’s also not weird, LOl. Yea, there’s a good bit of chaff out there, good luck sifting it out.

  2. Jeannie says:

    well, I too have gone online dating sites and i even found a guy who treats me well but the problem is my family. They don’t like him for they say he treats me badly and they are not crazy of him having C.P. i do love him and try to have a relationship with him yet its difficult when unable to drive or be totally independent! Before him it was hard telling the guys I met I had MS but figured if they are interested they will stay if not it was worth it. If it doesn’t work out I think I am done with online dating and I also think marriage might not be for me since I have never been fully independent or have my alone time.

  3. Margie says:

    I divorced well before my Monster Dx. Had a 9 year old and 5 year to raise.I did not date then because I didn’t want to bring men into my children’s lives since they had just been drug thru a divorce. So, I remained single, raised my kids, then along comes the Monster! It was bad enough that I didn’t feel all that worthy of anyone’d love after my divorce and now I really don’t. I feel like there is no one out there for me as I am damaged goods. So I will live out my days (I turn 50 this year )single. I do have many good friends, just no love interest. I have not tried the online dating scene at all, not sure it’s for me 🙂

  4. Patricia says:

    It never cease to amaze me on this dating forum. I am 54, ex-military, Army nurse with a BSN. But nevermind all that. Medically retired, verbally. But that’s another angry story. I got diagnosed with this Monster Species in 2006. Went to wheelchair, to cane and now occasionally cane. 100% VA and SSD. I get lonely a lot to tears lately at least 3-5 times a week. I have tried, too me, all aspects of dating. Oh yeah, 🙂 I am single. Had what I thought was a keeper but a few months to a year after finding out about this Monster Species he would disappear for days. We lived together, and wanted me to accept that behavior. So…No! Plus I was a divorced woman raising the last of my 3 children, who was 12 then, till that type of behavior alone with him moving in in the first place was unacceptable. Anyway, now I choose to not date. Besides for me men say the same things, “You are so beautiful”. I don’t mind that. But when I say or want to explain my Monster Species to them, it urk me how quick they turn from regular man to occasional caregivers. And some want me to pay them for being a caregiver and sleep with them as a girlfriend! What! I am not a harollet! So then I am labeled “Man, that woman is crazy. She got a disease”. Not MS which is not sexually transmitted. But when disease come out the first guy I mentioned, who care soooo much about me, who live across the street, mouth I’m doomed. Most want to date me because “Damn you are fine”. Not my heart, mind or self respect. So I am 54 and I isolate myself. If a MAN come my way well done. But for me to accept or tolerate anyone’s non-medical mental ignorance to only use me for the pennies I get monthly or the “Wow, you don’t look like you got MS”, No. I don’t need the stress…yet I am stressed cause of me not someone else. Oh well maybe it is meant to be…me and Monster Species.

  5. william says:

    I went from cane to walker to wheel chair.once in the wheel chair I gave up a social life

  6. obiwan says:

    I am 58 and have had MS since 2006. I too used the dating sites after my wife died. In my profiles, I had a disclaimer called “Truth In Advertising” in which I revealed I had MS. Better to tell the truth than keep someone in the dark. To do otherwise is deceitful, sort of like being a used car salesman. If the person is really interested in you, they will pursue you anyway. If not, F em; there are plenty of other fish in the sea. Honesty always works; you get what you are looking for. It sounds like you might be ashamed to have MS. I am not, because except for being sick, I am quite normal. Please don’t be deceitful; it makes you just like a lot of others. BTW the honest approach works. My significant other and I just celebrated our second anniversary of meeting and we are happily cohabiting. We met on a dating site and she has no physical afflictions. Really, honesty is the best policy.

  7. Kim Dolce moderator author says:

    Hi, obiwan, thanks for your thoughts. I’m not ashamed I have MS, I write about it and advocated quite openly every day. I’m actually not deceitful, I simply don’t blurt it out on the first email. Every situation has been different. I think it doesn’t really matter when it is revealed, the right person is going to just go with it no matter when I tell them. I’m glad you found a partner, it does make life happier.


  8. Mojosmom says:

    I, too, have online dated, with mixed results. I decided to lay it all on the line up front; if the cane (walker, in my case) scared ’em off, I didn’t want to waste my time (or theirs). I met the most amazing guy December 2010. He moved in, December 2012 and we’re still going strong! Also, I read a great book, “He’s Just Not Your Type” and it changed how I selected him, in the first place…. The same old, same old wasn’t working….. Best of luck!!

  9. Ginger says:

    When I was diagnosed about 5 years ago, my husband did not accept my condition and we separated and then divorced. After a few months I decided to try online dating since my chances of finding a suitor with the dating pool around me was very limited. I decided that I would be very honest about my MS and would tell my dates about my condition on the first date so I wouldn’t waste my time or theirs if they couldn’t accept my condition. I didn’t have many second dates until the right one came along.

    A man contacted me and we corresponded for a few months, but because I was finishing my Master’s degree, we did not meet until I had finished my coursework. When we meet we discussed my illness along with other things people talk about on dates. We connected on so many levels and I know then that we would get married.

    I feel like I was very lucky, blessed, or whatever you want to call it. Finding someone when you have MS adds more stress when dating, but sometimes you can find the diamond among the lumps of coal.

  10. Kim Dolce moderator author says:

    Ginger, I’m so happy for you and so inspired by your good fortune. Thanks for posting! Kim

  11. Pops says:

    My wife left me due to my diagnosis of probable ms after living with the symptoms for several years. I was active duty navy working as a nuclear engineer, supervising the operation and maintenance of the ships power plant. I got to the point that I could no longer physically take the physical and mental stress. I went to work at a shore facility and during the off time I had I worked with the local NMSS chapter, running a couple of support groups and training support group leaders. I also helped out with all chapter services functions. While I was helping out at the MS Walk I met a young lady that was living on her own, with just SSDI. She was asking about getting some help fixing some things in her house. I had quite a bit of experience, having had my own handyman business, so I volunteered. 18 months later we got married. We both knew about each others diagnosis from the start. It made dealing with those issues pretty easy. We just, yesterday, celebrated our 18th wedding anniversary. I have been diagnosed, in 1985, with PPMS and fortunately it has progressed fairly slowly. My wife has RRMS and does pretty well. She was using an electric wc when we met but now gets around w/o any support most of the time. We have 2 children, 14 and 17. It is so wonderful to have two teenagers at home….They are normal teenagers, just lovely.

    I can really relate to what you have been through and what you are going through now. I went on several arranged dates, set up by my friends. I didn’t get too far there. I did have a really good relationship with someone I already knew. She also knew about my medical history, we had some great times, but it didn’t last. My wife has stuck with me through a lot. Right after we were married, I had surgery to fuse my neck. That was pretty extensive and had a lengthy recovery. Then, shortly after the Navy retired me I went through a period of total hell. I was a real, nasty, SOB. We did separate for a short while but got back together once I was in control with the right meds. I received my VA designation of 100% disability and the same with SSDI, in about 4 months. We live pretty well. We opened a business and have worked it together for more than 10 years. Considering we are with each other, 24/7 12 months a year,we are in great shape. And she hasn’t killed me yet.

    There is hope for you and everyone else that is single with ms. I do not think we are unique. We do get some interesting comments when we tell someone we both have ms….Take Care, Pops

  12. Kim Dolce moderator author says:

    Pops, thanks for telling me your story, I am so inspired 🙂


  13. I read your story and had to smile. Injecting humor and humanity into a situation that is, at first blush, not funny is a rare gift. I am 55, male, and have been married to an amazing woman for almost 27 years. About half of those years have been spent under the cloud of my MS diagnosis.

    I read your blog entry and tried to imagine myself in the position of dating again. Honestly, I don’t think I would actively try to find another companion if my marriage went south (and I really can’t imagine that happening). For one thing, I would be unable to be chivalrous because, like you, opening heavy doors or pulling out chairs for a date would probably result in me falling on my ass. Call me chauvinistic, but I can’t imagine a woman (other than my present wife) doing those things for me.

    Another reason I wouldn’t actively seek out a companion is my independent streak that I partially attribute to being painfully shy, especially around women. Almost every relationship I have ever been in has been fully or partially initiated by the woman. Not to say that I was an unwilling participant (except perhaps once ;-)), but I seem to need a nudge, probably due to a fear of rejection. And MS would only magnify that fear.

    Thankfully, everyone is different, and I wish you good luck. Please keep writing.

  14. Kim Dolce moderator author says:

    Synaptic, thanks so much for sharing your personal story, I’m so happy to hear that you have a loving and dedicated spouse. I’m shy, too, and can totally understand how you have envisioned being in my situation. And because my husband rejected me because of my disabilities, that fear of rejection looms large in my pursuit of a new love.

    I hope you’ll never be in my situation, but if you ever are, I can tell you that it isn’t as bad as we imagine it to be. I’m deeply wounded, but I’m okay.


  15. Daisy Dreams says:

    I would love to have that romantic first love feeling again, but I too was rejected by a spouse so I fumble around alone. I am 55 also, and fully expect to end my life alone. Dating seems that it would end up with constant rejections which I am not willing to risk.

  16. Kim Dolce moderator author says:

    Daisy, I so understand your feelings about that. My experience on dating sites so far supports your point that we will be rejected a lot, I do often get silence after telling them I have MS.

    But I remind myself that I had similar dating experiences years ago, too, before I had MS and later, when the MS was much milder and not visible. I’ve been rejected for being too smart, not smart enough, too deep, too outgoing, too shy, too much of a good communicator, and any number of other things that don’t fit another’s expectations. Finding love is going to be hard no matter what our qualities are or what kind of baggage we carry.

    It does take courage to put ourselves out there, for sure. I hope you are thriving as a solo act. Be well.


  17. Allie says:

    I love your writing. Thanks for the smile

  18. Kim Dolce moderator author says:

    Thank you, Allie. I hope you’re doing well.


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