Running a business while living with multiple sclerosis is no easy feat. Living Like You blogger, Birgit, shares what she’s learned about the power of networking.read more
I have been travelling on the multiple sclerosis rollercoaster since 1988, and what a ride it has been. When I think back on how I’ve made it through this unpredictable journey, few things stand out more than the immeasurable value of connecting with others who have walked in my shoes. Over the years and to this day, I find myself turning to two distinct places for this kind of encouragement and perspective: peer support groups and online resources.
Finding Your Peers
Over the years, I have connected with various peer support groups. One of my peer groups met every month on a very casual basis. Sometimes we discussed our symptoms and health, but mostly we just shared what was going on in our lives, bound together by the common, unifying bond of living with MS. I felt comforted knowing that there were others travelling along the same road, and it was easy to connect with people who understand firsthand what it’s like to face life with a chronic illness.
There were definitely support group days when I just felt like staying at home on the couch, but I always pushed myself to go. I realised the group was like exercise: I almost never came away worse than when I went in, and often, I came away feeling better. Knowing that a meeting is scheduled gives me a focus, and I look forward to meeting people outside of my home. Each time I go, a latent fear of isolationism is stomped upon again. I am, by nature, a very positive person and somehow these peer groups help me maintain my positive attitude in life.
Navigating Support Online
For somebody living with chronic illness, the Internet can be an invaluable resource. Even if too exhausted to get out of bed, I know that support is just a few clicks away. While I am not afraid to talk about tough or embarrassing symptoms, I have found the anonymity of the internet to be especially helpful. There are chat rooms and discussion forums for people with MS where all sorts of questions can be asked, even the most awkward ones. Chances are you’ll find that you are not the only one with that question or issue! After all, there are roughly 2,300,000 people across the world with MS and, while symptoms vary immensely, you can be sure that at least one other person is experiencing what you are going through.
I am not going to mention any particular site, as my preferences may not be a match for yours, but I encourage you to explore and find an online resource that fits your needs. Also, do not forget the value of social media, but be sure to think carefully about how you manage your presence online. And finally, remember to treat information garnered online carefully and verify it with a medical professional when necessary.
First and most important thing to know: you are not alone! Support is available, but you have to know where to look. In fact, there are so many different resources out there that it can feel overwhelming!
In my opinion, the local branch of your National MS Society is a good place to start. I have found that local face-to-face contact is irreplaceable, but a great alternative is a friendly voice at the end of a phone. I contacted my local branch shortly after my diagnosis and they were extremely helpful and supportive; never pushy or forceful.
Life with MS should not be embarked upon alone. There are good people out there – whether they have MS, or simply want to help people living with it - who are available to listen. While it can feel difficult to reach out for help sometimes, trust me, when you are on the MS rollercoaster, it is worth every effort.