There are currently around 100,000 people with multiple sclerosis in the UK.
With this in mind, it’s perhaps surprising how little the majority of people know about the disease.
For those who don’t know that much about it, multiple sclerosis (MS) is a complex neurological condition which has many symptoms, some of which include fatigue, vision problems and difficulties with walking.
To raise awareness of MS and offer an insight into what it’s like to live with condition, here are seven things people with MS want you to know.
1) It isn’t all doom and gloom
In a blog titled ‘Why I’m Thankful for My Diagnosis of Multiple Sclerosis’, Cathy Chester says MS isn’t necessarily a bad thing.
“I would never have known the joy and unconditional love of dating someone who proposed marriage to me despite my recent diagnosis,” she writes.
“I would never have felt the compassion and understanding of family and friends who loved me at my worst. I would have missed out on knowing extraordinary nurses who went above and beyond anything they learned in nursing school.
“I wouldn’t know people in the MS community, and other health-related communities, who continue to inspire and educate me every day through their strength and courage.”
2) Everyone with MS is different
Blogging on HuffPost Healthy Living, Elaine Gavalas says that MS changes from person to person and so each individual must find the right way to “self-love”.
“MS is notorious for being specific to each individual, so the course of healing that works for me is the only one I need,” she says.
“Committing to self-love and to listening to my own biofeedback blocked out the fear-based noise that surrounds our medical system.”
3) MS can open your mind to mindfulness
Advocate for disability rights Linda Noble Topf says living with MS has helped her feel grateful for what she has and forgive herself for what she doesn’t have.
“I believe that when people approach the end of their life and know they have only a short time left to live and no time to waste, they open up their hearts more profoundly, knowing they have less, not more, time to live,” she blogs.
“When I review my life and pay attention to the ways I might have studied a second language or had children or bought that water property in Florida, or my retirement, or traveled to Japan; I stop, slow down, remember who I am, and forgive myself, awakening to the depth of my compassion for myself.”
4) You still want to have sex when you have MS
Bestselling author Richard Cohen notes that “most men with MS will experience a urological issue, many of them sexual”.
In his blog ‘MS and Sex’, he talks about a support group where men and women with MS get together and talk about their sex lives and sexual dysfunction.
“It is too bad so many of us remain locked in the closet on issues of sex. Patients can be helped, but they have to step out in the light,” he says.
5) MS doesn’t change who you are
“Mum, I’m disabled, not dead.”
That was the comment that made Michelle Renee realise her daughter was still the same girl who loved to travel after she was diagnosed with MS.
“My daughter told me last week after we returned home that having MS has made her want to LIVE even more. We all have things in our life that we can either allow to hold us back or inspire us to live life even more to the fullest,” Renee says.
6) You shouldn’t assume people with MS want to be known as “sufferers”
“I know some people with MS like to refer to themselves as MS sufferers, and that is their choice. But for us who ask not to be referred to as a sufferer, please don’t call us that,” Helena Jidborg Alexander blogs on HuffPost UK Lifestyle.
“Newspapers love to use the phrase, as I guess it has more of an impact, it sounds maybe more powerful.
“One of my friends who also has MS pointed out to me, when I was complaining about this on Twitter, that being called a sufferer feels like being criticised, another friend with MS said it dehumanises us.”
7) It’s not just white men that get MS
“In the days and weeks following my diagnosis, non-white friends, even my childhood pediatrician who was Indo-Canadian, wondered how it was I’d come down with what many considered to be a ‘White Man’s Disease’,” Priya Sankaran blogs on HuffPost Canada Living.
“By the end of the summer the initial diagnosis (Remitting Relapsing Multiple Sclerosis) was confirmed by the neurologist who would become my MS doctor at St Michael’s Hospital.”