My journey with multiple sclerosis (MS) began when I was just 16 years old. I noticed a strange buzzing sensation in my hands and suddenly lost the ability to hold a pen. It wasn’t until a few years later when I was at university that I was officially diagnosed with MS, but at that age, I was pretty fearless and adaptable and didn’t give much thought to the potential long-term impact of the disease.
I would describe my life with MS as being a bit like a rollercoaster ride — with very intense lows during periods of MS relapses when my symptoms are at their worst but with some amazing highs (like pre-COVID overseas travel) in between.
Having lived with the condition for all of my adult life, there is no doubt that MS has had a profound impact on me physically, socially and emotionally. Even when I am not having a relapse, there are lots of little ways that MS affects my life every single day.
For example, always drinking with a straw due to shaky hands, never wearing high heels or thongs because I just can’t walk in them, taking daily medication to ease the stiffness in my legs and needing to balance walking my dog with other exercise and housework because my legs tire easily — I just cannot do everything all in one day.
These symptoms can often add a layer of difficulty to socialising and certainly dating. Due to fatigue issues, I tend to avoid any events that involve standing up for long periods, which makes it hard to mingle and meet new people. On the flip side, sitting down can be isolating unless a lot of other people are doing the same.
I have also found that my world becomes quite small during a relapse as I find it harder to get out and I don’t want anyone to see me at my most vulnerable. I have found this then results in a form of social anxiety, and it becomes really hard to put yourself back out there again and be in the right mindset to go to big events or even think about going on a date.
For me, fatigue and social anxiety are the two biggest invisible issues that come with MS. Having a bad day can mean cancelling plans at the last minute and in turn not receiving future invitations. It is hard to properly explain the deep impact of dealing with these invisible issues.
Dating is a real minefield! You obviously want to present your best self and get to know someone before you talk about having MS. But I have learnt that it’s better to be upfront, especially when you have visible symptoms that could be misinterpreted. If someone doesn’t want to date me because I have MS, I believe it says a lot more about them than me.
Being a fiercely independent person, I have always been happily single but I certainly feel that having MS has had a big impact on this area of my life. Now that I’m in my forties, I would love to meet someone — not least because everyone I know seems to be coupled up. Singles events are something that have worked for me in the past, so I’ll keep looking into that.
Having lived with MS for 27 years, I feel very grateful that I’m still able to walk, drive (my car has been modified with hand controls since 2008) and live independently.
I think now, at 43, I take better care of myself than I ever have and recognize that regular physical activity (walking, reformer Pilates, stretching), a fairly healthy diet and good self-care for mental health, such as meditation, practicing gratitude and journalling, are all important tools in managing my MS.
Luckily for me, there have been huge advances in research and treatments over the last few years. For this reason, I am a huge supporter of research and, along with some friends, have helped raise $30,000 for MS Research Australia over the past 3 years.
I try to keep a positive outlook and take things one day at a time. I think trying to predict the future creates stress when you are dealing with an unpredictable disease like MS.