Sarah’s story

My diagnosis  

About three years ago I had lunch with a friend and told her about the hearing loss in my left ear. Whilst it wasn’t a drastic change, it was noticeable to me and quite irritating, especially due to the tinnitus. My friend urged me to see my GP, saying, “It’s important”.   

During the consultation, I underwent tests and was informed that I would need an MRI scan; I was shocked and horrified by how overwhelming that experience was. Thankfully, a very kind nurse held my hand, and that small gesture provided me with comfort, helping me endure the discomfort of the machine.  

A few weeks later I returned to see that consultant alone to get my results. She said to me something like “You have MS and have also experienced a mini stroke”. I’m not sure of the exact words, but MS and mini stroke were what stayed with me.  

Honestly, the first thought that crossed my mind -though I am ashamed to admit it -was, “Well, if I have MS, I don’t want to live anymore”. Having worked as a care aide many years ago, my experiences with people who had MS weren’t positive. I thought to myself “That’s no life, certainly not one I want to live”. I was in total shock. When I got into the car where my husband was waiting with our dog, I burst into tears.  

After a long wait, I saw a neurologist who confirmed the diagnosis. The waiting period was extremely difficult; I was filled with uncertainty and questions. However, instead of providing answers, he bombarded me with questions. I left feeling red- faced, anxious and frustrated that I still didn’t know if I had MS and what to do next.  

It wasn’t until two and a half years later, after two additional scans that I received confirmation of my MS diagnosis.  

What helped me  

After my initial diagnosis, I watched the film “Living Proof” featuring Matthew Embry and I read numerous books on MS, one of them Overcoming MS by Professor Jelinek. I found the Overcoming MS team to be positive, but I’ve struggled with the lifestyle changes. I’ve mostly given up dairy and try to avoid processed foods, but I’m not ready yet to commit to all the recommendations just yet.  

I’m not sure if my hesitation to fully commit to all the recommendations is because my symptoms aren’t very severe at the moment or because of the challenging family dynamics I’ve been dealing with over the past year. I have become more cautious about my eating and drinking habits though.   

What changed  

My relationships have drastically changed. I’ve lost a couple of people in my family. When I realised I had MS, I became acutely aware of the need to prioritise myself and truly take care of my wellbeing.  

Part of that process involved having honest conversations with people about our relationships. I was hoping these discussions would lead to repair and better support, but unfortunately, the opposite happened in some cases. Speaking honestly can be too much for some people, and perhaps up until my diagnosis, it was for me. Maybe having MS has made me stronger and more courageous in this regard. I finally spoke openly, despite having avoided those conversations for many years. Although the outcome was devastating, it validated my feelings about the lack of support in my life from certain individuals.  

What still isn’t easy   

My work had to take a back seat for a while. As a self-employed individual, I was able to reduce my workload for a few months. My energy took a nosedive, and I felt completely exhausted -mainly due to family issues rather than MS. Now I am back working at full capacity and enjoying what I do.  

I joined Overcoming MS’ Pathways, which was very helpful in providing information and ideas for moving forward. I have joined my Circle but have not yet met anyone in person.   

I often find myself worrying about the aches and pains that come with ageing. It’s never just ageing for me; I always question whether these physical issues are related to my MS. I know I need to exercise more and take care of myself better.   

Life today  

Strangely, I sometimes consider my MS a gift. Without it, I wouldn’t have confronted some challenging family dynamics and grown from these experiences. I’ve had to reassess my entire life and the people I want to have in it. I love my work and now enjoy my home life much more. I find purpose in spending time with people who I love and in engaging in activities that bring me joy, no matter how complex or simple they may be. I love spending time in nature and with animals.  

Nobody told me… how profoundly this would affect my life and my relationships