Getting a diagnosis of multiple sclerosis is a hard pill to swallow. The future can feel more uncertain than it did before and you can get caught thinking about all the “what if’s“. One of the biggest fears I’ve had to deal with is that of being a burden and feeling alone in my journey. Does that sound familiar? It is one of the things we need to work past in building, maintaining and accessing our support networks.
There will be times moving forward when you need help, whether it’s someone to talk to, help with some chores around the house or errands you need to complete. By developing your support network, investing time into your networks, you’ll have those people to fall back on in your times of need, and regardless of your situation, i.e. whether you have MS or not, we all have our down times and need help.
Jump to;
In person
There are obvious supports in our lives when we think about the people we see or talk to daily or weekly such as our families and friends. This is a great place to start to fortify your network and it doesn’t matter if you’ve told them about your diagnosis as you already have a connection with them. This connection may be really strong; some people are from very close-knit families and can turn to them for all the support they need. Others may find these relationships strained, or not available to them at all. This could be due to isolation, either physically through distance or emotionally through lots of history – and lets face it, we all have a lot of history with our families!
If your family is not a support that you can rely on, and you don’t think you have a close network of friends for support, there are always other options.
Imagine a typical week for you. Who do you see during your day? Have you got family at home that you see before and after work? Who do you see at work? Is there a regular coffee shop or supermarket that you go to? Do you speak with friends online, comment on their Instagram stories or chat with them in WhatsApp? Think about how many people you interact with, both face-to-face and through technology. These people are part of your support network. The lady at the coffee shop who recognises you and knows your order off by heart; the work colleague in your office who smiles and nods when you pass each other in the corridor; the regular faces you see at the gym or the park when you’re working out or walking the dog. You may not see these people as part of your support network yet, but they can be, you need simply to figure out and appreciate the kind of support they provide.
Often when we think of support networks we assume that means people who will drop everything to help us when we need it. Whilst that is a kind of support, it’s not something that many people can actually offer others. How many people could you realistically offer that level of support to? We have finite resources, including our own level of support, to share around and we must appreciate that. However, once we start to appreciate the different kinds of support that is on offer you’ll be surprised to see just how much people are giving each other.
Let’s think about that lady that works at the coffee shop. It may not seem like much but she remembers you (or your order!). She provides you with a smile, a note of recognition and one of those nice little pick-me-ups. Now that may not sound like much but our brains do an amazing thing when we see a smile, we mimic that expression (there is ample research behind mirror neurons and their function in humans and primates). In a way we “try on” that expression so we are able to identify what the other person is feeling based on our own experience of making that face, achieved in a matter of milliseconds. The result is that for a moment you are flushed with the feelings associated with a smile from your previous experiences of smiling. It may not be much, but on a day when you’re struggling, when you’re finding it hard to cope, seeing that lady at the coffee shop who will share a smile with you, who can help flood your body with some good feelings for a moment, is some priceless support.
Since my diagnosis I have made a conscious effort to engage more with the people in my every day life. I take a few moments out of my day to talk to the staff at my gym when I’m there to work out. I have developed my friendship with the staff at my local cafe who always want to listen if I find I want to talk. I have also made more of an effort to talk to my friends and family. I struggle to have time or energy to meet up with many of them in person and so I take the time now, usually when I’m commuting or catch myself scrolling social media to reach out and see how they are – it’s a two-way street after all, we can’t be all take, we must give our time and support too. I have also reassessed what some of those relationships provide in terms of support. Was I expecting too much from some friends and that’s why I was feeling lonely? Just as I am pressed for time and energy, most everyone is and perhaps all they can provide is a chat over social media and that is still significant.
Take the time to think about the people you interact with during your week and what you have been expecting of them in terms of support. Be honest with yourself and see if you are expecting too much from them, or misreading the kind of support they offer.
Once you start to appreciate what people are offering you and what you are offering others you may be pleasantly surprised to see just how large your support network is.
Online
There are so many pages online covering MS (including mine!) that it’s easy to get lost whilst looking for answers, advice, or the support you’re after. One of the best pieces of advice to me is that you will often see people posting online when they are struggling, having a hard time with their MS, you are less likely to find people posting about when things are going well. This can skew your interpretation of what life is like with MS and honestly it can get you down. There are also plenty of forums and Facebook pages that I joined in the beginning only to find I had to leave them. On some, not all, the content was dominated by negativity and whilst everyone’s journey is their own the regular negative content became hard for me to cope with and made it increasingly difficult for me to stay positive for my future. So, as you search online for support groups, communities to join, take time to assess if the groups you are a part of are helping you or harming you.
MS Australia is a great place to start and you may have come across it already. When I was diagnosed I found this page quickly and also found myself to be overwhelmed with all the information they had covering every topic. At the time of my diagnosis I wasn’t ready to start reading about how to stay functional at work, or how to access the NDIS. This left me feeling inundated with facts and figures and fears for my future. I searched the web further to find more relatable content, more digestible and less confronting information before I returned to their site and went on the access all of their great and informative content.
Fantastically, they have numerous support services for referrals, health and well-being, as well as advocacy and employment services. I have also enjoyed the many free webinars they provide that you can sign up for on their mailing list.
MS Australia also have a Facebook page, a YouTube channel, Twitter feed, and an Instagram page letting you get the updates you want the way you want.
The Overcoming MS site is another that is full of valuable information and is centred around a doctor, Professor George Jelinek who developed MS and went on to change his lifestyle to manage his condition. He has written some inspiring books going through the science behind the changes he has made to his lifestyle and why he believes it is beneficial to everyone with MS. These books are provided free to anyone with MS and you can order them through the website. I think they are a great first resource as well, the book is well written and digestible and you can’t help but feel you have more control over your condition than maybe you were led to believe at diagnosis. Whilst I do not follow his lifestyle plan exactly, I have used this book as a guide post for my own deep dive into the research and subsequent changes to my lifestyle based on what I have found.
They also have support groups around the world that you can join, and an online forum if there are no support groups near you or you are unable to get out to attend their meetups.
In the end, the people we surround ourselves with and make connections to will help us. We are a social species and we thrive on social contact, be it in person or over technology. Make the time to contact others, to solidify your relationships, and appreciate them for what they are and what they can provide you. You are not a burden, together we can help each other as those connections you are working on provide a connection for someone else.
Please feel free to reach out if you would like to talk about anything raised in this article.