I remember frantically Googling my symptoms after losing vision in my right eye and seeing the words Multiple Sclerosis. That moment will forever be etched in my mind. It was one of the most terrifying moments of my life. Even though I didn’t know for sure, somehow, I knew.
It’s been a year since my diagnosis. If you’re reading this, you might be feeling the way I did back then: lost, isolated, overwhelmed, terrified. Maybe even hopeful or determined. I still feel all of those things at times, but overall, thanks to the amazing people I’ve met along the way, I’m OK. I’m still the same person I was before.
My life has changed a little (I know everyone at my local hospital now!) and my symptoms flare from time to time. But has my life changed in the way I feared it would? No. Not even close.
I was very fortunate that early on in my diagnosis journey, my local MS nurse pointed me towards MS Together and thank goodness she did. I contacted their counselling team and was able to access 1-2-1 counselling not long after my diagnosis. Talking to someone who also lives with MS helped me completely reframe how I thought about having it. At first, MS felt like something hideous and terrifying, something I wanted to reject and have nothing to do with. Now, it’s simply something I have. Yes, it can be horrible, but like so many things life throws at us, it’s manageable and life doesn’t stop.
One of the most helpful aspects of counselling was speaking to someone with lived experience of MS. You’ll speak to neurologists, MS nurses, radiologists, all of whom are vital, but someone who actually lives with MS just knows. And the relief that brings is hard to put into words. Since my diagnosis, I’ve met so many people with MS I never would have known otherwise. There is a whole community out there, and MS Together and its counselling service can help you find and access that support.
Most importantly, counselling helped me believe that my life isn’t over. It may look a little different, but it isn’t finished. Knowing I had that lifeline, available whenever I needed it, helped me through those first difficult months. It helped my partner and my family too. They knew I was being supported, and that reassurance helped them as much as it helped me.
