Some south Asian people give credence to superstition and therefore ignorance. This can have negative, real-life effects.
Ignorance leads to a lack of empathy, which dehumanises people. As well as affecting the MS community, on a wider societal level, this leads to discrimination. And, over time, this becomes ingrained.
Therefore, it’s in our interests to talk about MS. I spoke to people in our group, Asian MS, about the top 6 myths we encounter day to day.
1. Myth: You don’t come to events because you don’t care
A big family wedding is coming up, but you don't get an invitation. The last few times the venue hasn't been accessible and there's been nowhere for you to rest during the day. So, you've ended up not going because you don't want to be a burden. Then family has assumed you just don't care.
Truth: People will often make assumptions if they don't know about issues surrounding MS. It’s human nature and, unless they know what sorts of things might make it easier for you to attend, it may be that they just don’t realise.
Having conversations about your MS can help avoid assumptions on both sides, and can help to increase understanding and inclusion.
2. Myth: You’re lazy because you’re always tired
This also comes from people not understanding MS and that many symptoms are hidden. For example, heat sensitivity and fatigue could easily be mistaken for laziness as there’s no apparent reason why the person should be this way.
Truth: There are many reasons why someone may have an MS-associated problem and being lazy or weak is not one of them. People cannot just snap out of having MS and many people may need help to do things others find easy. This help may include counselling, medication, self help and support from friends and family.
3. Myth: My doctor can cure your MS
I hear this one a lot: "You should go to this doctor in India and he will cure you."
"I know somebody who went to him with the same kind of problems as you."
Truth: There is no cure for MS, but therapies and advice from your MS health team can help. Your team can include neurologists, MS nurses, physiotherapists, occupational therapists and speech therapists.
4. Myth: No one will marry someone with MS
"Your aunty has a marriage proposal, but we don't need to mention your MS."
"When you chat to the guy, do not tell him as no one needs to know and we don't want to lose this opportunity."
Truth: MS does not mean you can't get married or find love. The more honest we are about it, the more our community will start to feel comfortable with it and learn to accept what MS is and how it can be managed.
5. Myth: MS is infectious
A person asks after someone as they don’t look in good health. When they’re told the person has MS, they assume it's infectious.
Truth: MS isn’t infectious. It is not clear what causes MS, research suggests a combination of genetic, environmental and lifestyle choices could be responsible.
6. Myth: Everyone with MS uses a wheelchair
Some people assume I’ve been in a wheelchair from the start of my illness.
Truth: From diagnosis, it took 17 years for my walking to get bad enough for me to have to use a wheelchair. Many people with MS will never need to use a wheelchair.
This MS Awareness Week (19-25 April 2021) we’re saying #LetsTalkMS.
MS can be tough, and for many people talking about it can be challenging. Help start a conversation about MS – share your story
Ways to talk MS
Our online sessions and webinars are a great way to connect online. You can also join the conversation at Facebook, Instagram and Twitter. And our MS Helpline is here for you, offering emotional support and information.
You can also get in touch with the Asian MS group to find community support.