Over the last year, there has been a tremendous shift in the way those living with multiple sclerosis stay connected, not only to their family and friends, but also with themselves.
For many living with multiple sclerosis (MS), their symptoms and its impact on everyday life can often leave them feeling disconnected and isolated. They are having to adjust to a new way of life, as they look to take control of their health.
However, more often than not, there are many others who are thinking or feeling the same way, as they navigate through understanding their disease.
It is important to stay connected: to one another, but also yourself.By sharing your experiences, you can learn how to manage, while also overcoming challenges and new experiences with this progressive disease.
We spoke to members of the MS community, who shared their anonymous experiences and feelings on how this disease has left them feeling isolated, but also the ways in which connecting with others has helped them to feel supported.
“We are trying our best as a family to adapt to our new reality. My mind wanders as I think about our uncertain future, which upsets me greatly. I am trying to be more mindful as we both do yoga to try and decrease the stress in our lives. Even though our future is somewhat uncertain, what is certain is that a positive mindset, loving each other, living a healthy lifestyle, will hopefully mean my husband will live a long and happy life.”
Worrying about the future is common for not only people living with MS, but also their loved ones. Being present and in the moment is important. Try to set achievable goals to connect with yourself and your health, so that you can help manage symptoms both now, and in the long-term.
“Unusually, my mother was diagnosed just before she turned 70 – she was probably undiagnosed for decades… We see her MS as a joint family challenge, and we do everything to make life easier for her. This impacts not only her but all of us, particularly my dad as the main caregiver. We grew stronger together and learned through my mom`s story to understand what it really means to live life as a family, looking after one another."
It can sometimes feel difficult to talk about your MS with friends and family, but the people closest to us can be a valuable source of support.
“When talking to others within the MS community about all symptoms and issues, everyone says, “Oh yeah now that I'm thinking about it, I also have this problem, and I have this problem, and other problems”.
When that happens, you know that it’s not you, it's the MS that is causing these problems. And if it is the MS then there is a way of dealing with it.” Often, the symptoms of MS aren’t always recognisable, they’re hidden and the impact of these symptoms on quality of life can all too often be unseen by others. That’s why it’s important to connect with others within the MS community, which could help you to understand your own disease and how to manage it better.
“I have a walking stick to help me not become too tired, or worse fall over, when walking in and outside my house. Sometimes the reality of not being as active as I once was is difficult, but my young daughter reminds me to smile when she plays with my walking stick and pretends she is a granny.”
Fatigue is often a common symptom of MS, which may not always be easy to recognise. Remember to take breaks and the time needed to recharge. MS doesn’t need to get in the way of living life to the fullest.
“I decided to connect more with people like me, on a personal basis. I became a caregiver to a fellow MS warrior, so I could understand better from a caregiver’s perspective…”
The role of the caregiver provides support and encouragement to the person living with MS, as well as to themselves. Communication is key, as well as it being important to both openly share feelings, to encourage a positive relationship.
“Of course, there are a lot of problems with finding the right words. Sometimes I cannot find the right words to explain what I would like to say. So I take my time, try to…. you see now, this is what I’m referring to.”
For many people living with MS it can often be difficult to find the right words to say. But, that’s okay. Take a moment to connect with yourself, until you are ready, and then try connecting with others. A lot of the time, talking can help.
"I do rely on my partner for an awful lot, from cooking to helping me out of the shower and transferring to the bed at night... Pre-covid, my partner traveled abroad a lot for work and now that things are opening up more, he may travel locally more... A friend comes to stay whenever my partner is away and over time we have totally learnt how to work together as a well-oiled team... I am fortunate that I still have quality of life.”
The global pandemic undoubtedly changed aspects of our lives, as we journeyed to find our ‘new normal’. Early planning and the support of your network will help you to manage your MS and daily activities.
Each and every person manages their MS and their symptoms differently, and it’s important to take the time to recognise that.