People often have no idea what to say when you disclose that you have MS. It can come at quite a shock when its not expected. And when you are not in a wheelchair, or visibly showing signs of disability, people seem to think you’re well.
How often have you heard people say….
But you look really good…
My friend’s Aunty had it and she was cured by eating ….
My family member has it and they are in a wheelchair…
People may be coming from an innocent place when making comments like that, however, some comments can be really hurtful even if they aren’t intended that way.
Addressing the first one, what is MS supposed to look like? I’ve got a neurological condition, I’m not mutating into a ninja turtle!
How I look may not reciprocate how I am feeling. I mean, what does numb or buzzing legs look like? What does incontinence look like? What does nerve pain and electric shocks look like? Not everyone with MS has the physical appearance of disability. And with touching on that subject, some days a person with MS may be suffering immensely, and other days you see them, they may be feeling alright. Thats why MS is known as an invisible illness. You just can’t plan MS.
Second one is always a fun one… I mean that very sarcastically. Lets just throw it right out there that nothing can cure MS. No magic pill, no medication, and certainly no food concoctions! It’s so difficult to be straight faced with people when they say it because they actually believe the rot that they are saying. There are claims that certain diets and supplements can help, and that’s ok because that can be the case for some people. Things that promote health and wellness, specially when aiding in anti-inflammatory are ok to mention, just watch how you make your claims because there is no cure and to state otherwise is a cruel joke.
Lastly, everyone with MS is different. There may be similarities, but, not everyone progresses the same. There are different types of MS, starting from Relapsing Remitting MS to Primary Progressive MS. You cannot really compare people with MS, but unfortunately that can and does happen, even between people living with MS. It’s very unhealthy to compare because everyone is going through their own discomfort and challenges.
If I can give a word of advice for anyone entering into a conversation with someone diagnosed with MS, please don’t go giving your words of wisdom. We can google and research, chances is we’ve googled way too much. We have a teams of Specialists guiding and monitoring our progress. They have years upon years of study and experience.
Please don’t put us in a position that can make us feel awkward and uncomfortable, we feel bad enough as it is.
If anyone you know has MS, the best response you can have is “I’m sorry to hear that, I’m here if you need me”, and check in from time to time.
Feel free to share this with friends or loved ones because education is key, and is relevant for many other conditions as well.
We live in the hope that one day there will be preventative measures and a cure for MS and other neurological diseases.
Thank you for reading!
Cover photo from Andrea Piacquadio