What It’s Like Getting Diagnosed With Multiple Sclerosis in Your 20s

This article originally appeared on VICE Germany.

It all started, around ten years ago, with a sudden tingling in Mo’s hand. By the following morning, the left side of her body was entirely numb. It took six months of extensive examinations in the hospital before the cause was finally determined to be multiple sclerosis (MS). “I will never be able to dance again,” was Mo’s first reaction. “I could hardly listen to the doctor; I got overwhelmed and cried.”

At the time, Mo was in her mid-20s and had only a basic understanding of how the debilitating autoimmune disease would affect her: the pain, the disability and the amount she would depend on loved ones for care. 

Now, ten years later, Mo’s made adjustments to her life. She quit dancing, started doing yoga, and runs an Instagram account where she documents what it’s like to live your day-by-day with MS, while fighting back against misunderstanding and prejudice of the disease. All while maintaining her anonymity through the subtle masking of her face: “I want the focus to be on raising awareness, not on me as an individual,” she says.

There are around 130,000 people with MS in the UK, and over 70 percent of those affected are women. And yet it remains a misunderstood disease. It’s a neurodegenerative illness that causes the immune system to attack healthy tissue of the central nervous system. This leads to inflammation and damage to the nerve fibres in the brain and spinal cord. After the inflammation heals, the body produces hardened scar tissue. Translated, multiple sclerosis means “multiple hardening.” 

For most patients, the disease begins between the ages of 20 and 40 and presents with a variety of symptoms. As a kid, Mo had already suffered strong headaches accompanied by something she described as a grey veil filter on her vision – she is now blind in her left eye. 

Difficulty finding words, problems with swallowing and walking, and bladder weakness are just a few of the symptoms that make Mo’s daily life challenging. “One of my most annoying symptoms is fatigue,” she explains. “I get sudden, overwhelming tiredness, and I lose control of my body from one second to the next. It knocks me out.”

We sat down with Mo to get a deeper understanding of MS, the fears and difficulties it brings, and how it affects things like dating, sex and relationships.

VICE: Hey Mo. Which reactions to your illness annoy you the most?
Mo: One of the most common questions I get is whether my MS is contagious. No, MS is not contagious. I can partially understand that people ask about this because we know so little about MS. On the other hand, this kind of question can make you feel very emotional, especially if you’ve been recently diagnosed. People can make you feel different or disgusting. 

It’s also not cool when people make fun of me when I have a hard time finding my words. Humour is important, I can laugh at myself and so can my friends. But if someone is not close to me, I find it inappropriate. I also don’t like it when people say I shouldn’t have children so as not to spread the disease. It’s wrong and annoying.

How does your body react to drugs and alcohol?
I rarely drink nowadays. I feel that alcohol exacerbates my MS symptoms. The day after drinking, I’d always feel crappy. And I don’t take drugs. My body already reacts in extreme ways to emotions when I’m sober. For example, if I’m very happy, my legs tingle – every time. 

My body is particularly sensitive to stress, unhealthy food, heat and cold. These things can make me feel like I’m having a short relapse of old symptoms. Relapses are when you get either known or new symptoms that last longer than 24 hours. Fortunately, I haven’t had a relapse in seven years. When they come, I usually get treated at home with cortisone infusions, but I had to go to the hospital once because I couldn’t feel my legs.

How does MS affect your dating and sex life?
MS affects your entire nervous system, including your libido. Problems with lubrication, erection and orgasm are quite common. Bladder and bowel problems also make the sex lives of MS patients more challenging. On top of that, MS also comes with emotional challenges, so it’s important to talk about this openly while dating. 

Many people with MS find this difficult, they don’t want to openly say they’re chronically ill. My grandma once told me, “Please don’t tell anyone you have MS, no one will marry you.” I wasn’t angry with her, that’s how the older generation thinks. But I’ve mostly had positive experiences when I talked to my dates about my MS. If someone has a problem with it, that’s a red flag for me. I used to try to justify myself and even apologise for my MS. Now I stand on my own two feet: You can only have me together with my MS.

Will MS shorten your life expectancy?
I have never discussed this with my neurologist, but through my own research, I know MS does not shorten your lifespan [this depends on which type of MS you have]. The course of my MS is unpredictable, and that now reassures me. But I also have depressive phases from time to time. Losing control over my own body has left a mark on me. When I suddenly couldn’t feel my body anymore, I got very frightened. Sometimes, I move all parts of my body just to make sure I can still feel them.

How often do you have to take sick leave from work because of your illness?
That almost never happens. But I regularly take breaks during my working hours. Fortunately, I have a great team at work who understands and supports me. That’s not something I take for granted. Many chronically ill people do not have this opportunity.

Are you afraid of becoming dependent on your loved ones?
Yes, I have a great fear of that. I don’t need it yet, but the thought alone scares me. Right after my diagnosis, I kept asking my neurologist when I would end up in a wheelchair. Now I know there is no answer to that – and it doesn’t necessarily happen to every MS patient. But it’s also not fair to view ending up in a wheelchair as a terrifying scenario.

If I’m honest, in my daily life, I could already use some help; like when I go grocery shopping or to pick up medication from the pharmacy. It would also be great if someone could come with me to my regular infusion therapy – but I don’t ask for it. 

I have an invisible illness. Although I would like people to notice my limitations, I also want to be independent. That’s a conflict faced by many people with MS.

Does your illness prevent you from trying new things?
It doesn’t, but it makes things more challenging. When I plan a trip, I make sure there’s a hospital near my accommodation. In the past, I used to have injection-based treatment, which made travelling a lot more complicated. I had to have my medications certified by a doctor for trips abroad, notify the airport staff during entry and exit, and make sure they’d be sufficiently cooled during transport.

I’d have to consider questions like: Does the accommodation have a refrigerator for my injections? Does it work? Is it hygienic to inject myself there? Looking back, I sometimes didn’t feel like travelling at all, it was too much effort. Since I switched to infusion therapy, I feel more free.

Has MS given you a new perspective on life?
Shortly after my diagnosis, I often thought, “Who knows how long I have, I don’t want to miss out on life.” I went out partying more, even though it was very draining. Now, I’m no longer afraid. Through the illness, I’ve learned a lot about myself and have become stronger. I used to be a people-pleaser, but now I make more conscious decisions and pay more attention to myself and my own needs.