MS Awareness Week: How Instagram educated me!

Clare McKenzie is a talkhealth MS Patient Advocate. This MS Awareness Week, Clare uncovers how social media has helped her through her journey with the chronic condition…

Three years ago, I was sent for numerous MRI scans, visits to the GP and Neurologists. Looking back, it’s no surprise that my head was full of questions: Will I be tired all the time? What will happen to my social life and career? Will I get all of these MS symptoms? Could I end up in a wheelchair? 


The questions swilled around my head. So, before I’d seen a doctor, I began fact-finding and Googling. I know you are often told not to do this, but I am glad that I did. Take it from me, search away.


I like to be aware of as many facts before I visit healthcare professionals. Honestly, we are often dealing with doctors and nurses who learnt their trade from textbooks over 30 years ago. Times have changed!


My best source of information wasn't from the charities, although they are great starting points, it was Instagram. I could hear stories from people living with MS, real-life experiences and more personal advice on the platform. For me, it makes much more sense than books and science. 


In a nutshell, this is what I learnt from my fact-finding journey:


No two people living with MS are the same. We are all unique. They call it The Snowflake Disease for a reason! 

Not everybody ends up in a wheelchair! Often, people with MS in the media and on television are depicted to have worst-case symptoms. Luckily, charities now work with production companies and actors to get the balance right.


It's not the end of the world, and it can change. You are the best CEO of your life, you are in control of things that can make a difference to your condition such as diet, exercise, meditation and wellness. You are your best advocate!


Saying no to social events is not taboo! Do not feel guilty, feel empowered. You might not feel up to attending an event for all sorts of reasons. Your friends will understand.


Enjoy today and do not overthink things. Try to stay positive but let yourself have bad days if that’s what your body needs. Go with the flow of your symptoms! 


The most important lesson that I’ve learnt is that things are not always MS-related. Seriously... they’re not! But if you are worried, contact your MS Nurse. They are always on hand to deal with your queries. 


Find your MS village of supporters and cheerleaders. They may be your family or friends, in-person or virtually. Know who you can turn to have a good chit-chat for tears and cheers. 


If you’re living with MS or caring for someone who has the condition, be sure to check out the myMS support programme and other resources on the talkMS hub.

This article was originally published in 2022 and has been updated accordingly.

Information contained in this Articles page has been written by talkhealth based on available medical evidence. The content however should never be considered a substitute for medical advice. You should always seek medical advice before changing your treatment routine. talkhealth does not endorse any specific products, brands or treatments.

Information written by the talkhealth team

Last revised: 27 April 2023
Next review: 27 April 2026