Learning about your MS
Learning that you have MS is a difficult day for anyone.
Once you’ve finally got the correct diagnosis, one question becomes quite clear to every patient: do I keep digging in order to find out everything that could happen to me, or just take each day at a time and deal with whatever comes my way?
For me the answer to the question is clear: the more information I can gather, the better.
But, we have to deal with the fact that there are many sources of information that cannot be trusted at all and as MS is different for everyone, you never really know for sure which symptoms you may have in the future.
For these reasons, it’s important to choose your information sources wisely.
There are many people sharing their stories and experiences on social media, telling us how it is for them living with MS. But it is important to take into account that others will have a different experience to you, and relying solely on online guidance isn’t the best way to stay informed of your MS. For that, it’s important to use a mix of trusted resources and support from your doctor.
When it comes to MS research and studies, paying attention to what work is being done to treat MS is great. But try not to become obsessed with constantly checking in on these things, because it can begin to consume your life. The most useful thing you can do is live day to day. Any promising news will always be announced by trusted websites when the time comes. And some websites may give us false hope so it’s better to keep both feet grounded in reality. Maybe this is a conservative vision, but I believe, when it comes to health this helps keep focused on living your best life today rather than expecting something drastic to change in the future.
When I was going through the diagnostic process I could not read enough about MS, from science-heavy medical journal articles I could barely understand, to angry blog posts from people who had lived with MS for years, and not forgetting the countless online forums promising to cure my MS if only I danced barefoot in fresh dew and drank expensive elixirs.
I wanted to immerse myself in statistics, information, first-hand stories and everything in between and could often be found consulting Dr Google at my kitchen table in the wee small hours after lying awake for hours with horrendous scenarios haunting me in the darkness. Speaking of which, one of the first things my neurologist warned me about was to never search the internet, but of course, what else would anyone facing a life-altering diagnosis do?
After a while, I honed my searches to what I really wanted to focus on and what was pertinent for me, namely employment legislation as I was being bullied – and would subsequently be sacked – when my MS became apparent in my workplace. Also, articles about fatigue, foot drop and neuropathy as these were the symptoms I struggled with the most. MS is unique to everyone, so over time I knew I could limit the flow of MS information I could handle, otherwise it threatened to overwhelm me, and with brain fog also a problem this was a much-needed strategy.
Now almost a decade has passed since my diagnosis and I rarely search for information unless a new symptom arises; I have learned to live in a way which suits me and my MS, a process that has taken years but works for me. However, I still feel it is important to keep up to date with breakthroughs within the MS world and I find Twitter is a brilliant platform for disseminating information. Likewise, it is an excellent place to raise random points about MS or to ask for advice from people who are going through similar experiences – the support and friendship of the MS family online has been a constant source of comfort for me.
I would advise anyone newly diagnosed to start with the trusted websites, such as the MS Society, Shift-MS and the MS Trust. Aside from a vast array of fact-checked information, they also signpost to interesting blogs and further resources. Perhaps explore social media and find a niche you are comfortable with. Whatever you are going through, you can be sure someone has gone through it before and will have a wealth of experience and information they are more than willing to share.