‘I’m Reminded That I’m Not Unlovable:’ The Reality Of Dating With MS

Roxy, @multiplesclerosisfashionista

“Be kind to yourself. MS can be frightening and overwhelming. Know you’re not alone and there’s a beautiful community of MSers online ready to help.”

After three years of debilitating symptoms like depression, cognitive impairment, and vision loss, Anna,* 24, was finally diagnosed with Multiple Sclerosis (MS). 

Like Anna, approximately 2.3 million people are living with MS worldwide and 1 million of those people live in the U.S. The chronic disease is unpredictable, attacking the nervous system. It’s also one of the most difficult diseases to diagnose due to the laundry list of symptoms that impact patients. The majority of MS patients are cis-women, who experience abrupt neurological changes. 

Anna’s diagnosis was not without its costs; the constant battle between her body and her doctors wore on her. As a result of the stress, her relationship suffered and ended.

“We would end up fighting about my health concerns. I would get frustrated, frightened, and confused,” Anna says. “A lot of times I took it out on them. A lot of times they weren’t patient.” By the time  she finally got a proper diagnosis, she and her partner had already broken up. “I thought ‘Oh no, who is going to love me now?’” she says. “I pitied myself.” 

In the last year, she’s come out of her shell by accepting her diagnosis and discussing it with others. Instead of feeling embarrassed or ashamed about her condition, she has begun to talk about it more openly and freely with friends, family, and potential partners. “I would say that I find it incredibly important to tell a potential partner about my MS diagnosis. I tell them immediately on our first date. It’s so much of my identity. I can’t withhold that information from them,” she says.

One study of persons diagnosed with MS found that a common theme in participants was their willingness to discuss their disease more after their adjustment to their diagnosis. For Anna,  discussing her disease with more openness allows her potential partner to understand her condition and it also helps her feel more aligned with her identity as a person with MS. 

While Anna says she was relieved by her doctor’s diagnosis, she had to begin the adjustment to life as someone with a chronic illness. MS affects the central nervous system, which includes the brain, optic nerves, and spinal cord. The body’s immune system will attack myelin—a sheath that protects nerve fibers—and disrupt communication between the brain and the body. In addition to physical side effects, there are psychological ones, too. Depression and anxiety are common in people who have MS, as a diagnosis may change how they view themselves and their futures. However, while MS can cause long-lasting damage, treatment can make the disease more manageable in the long-run. 

Dating with MS, like with any chronic illness, can feel alienating and isolating. Breaking the news to a new date can seem daunting. How will the date take the news? Are they willing to be with someone who may need extra care and support? Do they even know what MS is? Some people with chronic illness may feel like a burden and carry the emotional weight of their illness. These negative feelings about themselves may deter them from either telling their date or going on a date at all. MS can impact libido, everyday energy, and mobility. Sexual function is impacted due to the nervous system’s inability to send messages to the sexual organs. Libido and sexual desire are also typically linked to depression, fatigue, and anxiety for MS folks. If a person is depressed about their diagnosis or symptoms, they may lose their desire to have sex or experience higher levels of sexual dysfunction. 

For folks like Anna, these types of symptoms concern her, as she isn’t always sure how a date will react. “I worry about being rejected,” says Anna. But she would rather tell her dates right away and have them decide what they think about her condition. Dating always comes with a risk, no matter who you are. 

Nevertheless, everyone’s experience with their chronic illness is their own. If you feel like you want to wait until the second or third date to disclose your MS, that’s fine too. There isn’t an instruction manual on dating with a chronic illness, so disclose whatever information you find necessary and do whatever you find comfortable.

People don’t often experience symptoms of MS until they’re in their 20s or 30s, which is right when they’re coupling up and dating. “I’m only 24. I’m really young!” says Anna. “I have had my days of depression and anxiety, but when I go on a date and it goes well, I’m reminded that I’m not unlovable. It can get to you mentally sometimes.”

Anna said she immediately joined MS support groups when she was diagnosed. This helped her realize that dating and partnerships with other folks are totally possible. “As a trans woman, I really had to find a support group specifically for the MS LGBTQ community,” she says. “That was always important to me.” She explains that, before looking for a relationship, she sought out friendship. Joining a support group can foster companionship that isn’t necessarily romantic. Before reaching out and finding someone to love, understanding a new diagnosis and possible life changes is imperative to a healthy livelihood. 

But Anna isn’t entirely out of the dating game. She’s joined Hinge and HER but wishes Lemonayde, a dating app for folks with MS, would be available in the U.S. Although she’s not dating anyone seriously right now, especially during the pandemic, she says she’s built online relationships and friendships in the past year. “It’s hard to not have someone to be physical with right now but thanks to the Internet, I’m able to find other outlets and folks to chat with,” she says.

Folks with MS can struggle with intimacy, as 40-90% experience some sexual side effects, including vaginal dryness, lack of libido, erectile dysfunction, and issues reaching an orgasm. “I’m also just tired a lot,” says Anna. “My medication causes some side effects and MS brings on fatigue. I don’t always want to have sex.” 

MS-related sexual dysfunction can be grouped into three categories:

  • Primary dysfunctions are caused by nerve damage. 
  • Secondary dysfunctions include tremors or incontinence. 
  • Tertiary dysfunctions are emotional and psycho-social complications like depression or lack of libido. 

There are a few factors that can contribute to intimacy issues. Things like age, stress, medication, and anxiety can disrupt your typical libido and energy levels. Although folks may be embarrassed to chat about it, doctors can help; changing medications, seeking therapy, or using lubricants can improve your sex life, whether you’re single or coupled up. 

London-based blogger, health advocate, and sex advocate Roxy, 32, was diagnosed with MS in 2013. Like most MS patients, her symptoms started much earlier than that. When she was 18 years old, she woke up with double vision and blindness in her right eye. After being given steroid IV’s and a lumbar puncture, her eyesight came back, but her diagnosis was unknown. Doctors originally thought she had systemic lupus erythematosus.

Years after, she had headaches, foot drop (difficulty lifting the front part of the foot), anxiety, and depression. She said that she “generally had a normal life trying to attend fashion university and even [having] a part-time job.” In 2013, her symptoms worsened. Passing out became the norm, as did hot flashes, tingling, and a general feeling of being unwell. “I couldn’t write or perform normal tasks with my hands. My arm continued to lock up and felt tense but also hot to the touch,” she says. She went directly to the hospital where “all tests pointed at Multiple Sclerosis.” 

While she was relieved, she was also overwhelmed. “I took two years out for myself to dedicate that time to researching all about MS. In that year I changed how I treated myself; I stopped smoking and started exercising. I started using yoga and meditation as well as looking into how to improve what I was eating,” she says. 

“MS is seen as a more Caucasian disease, and lupus is something seen to be presented in more people of color,” says Roxy. “I feel like because of this, my treatment, progression, and overall health journey was slightly compromised and delayed. By speaking out about my experiences I’m hoping to not allow the same thing to happen to other people of color.” 

Roxy has been in a relationship with a trans womxn for a few years. “When I got my MS diagnosis, they were with me. They have been my support network since day one. It’s definitely been hard though.” Roxy’s ability to take care of herself has changed dramatically, and her partner has had to step in. 

“It’s definitely been hard navigating MS as a queer disabled pansexual womxn,” she says, but she also notes that her partner is the best thing to happen to her. Roxy seems to be kicking ass on her own, too. She’s launched her own merchandise called Sick and Sickening, is co-hosting a podcast called “Those Parts!,” and even has her own podcast called “Spilling Tea with Roxy,” where she conducts interviews and highlights common questions and concerns with folks who have MS. 

Roxy says having MS doesn’t define her, but it’s a big part of who she is. Using mobility aids and adaptations, she explains that her cognitive function can play out during dates. “I’d rather be open and honest from the start,” she says. Roxy’s tips for dating include being true with who you are, finding out your love language, knowing you’re not a burden, and understanding that you deserve love and to be loved by the right person. 

An MS diagnosis doesn’t mean you have a difficult or loveless future ahead of you. Dating is hard, no matter what type of life you have. National MS Society’s Relationship Matters program is a great enrichment program for couples who need support. Building a relationship with trust, partnership, and a strong connection is a big commitment. Finding a partner who accepts your MS and loves you for you is the ultimate goal. 

If you’re dating someone with MS, practice patience, inform yourself, discuss intimacy, accept the willingness to adapt, and remember to be their friend first and foremost. 

Like Roxy says, “Be kind to yourself. MS can be frightening and overwhelming. Know you’re not alone and there’s a beautiful community of MSers online ready to help.”

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