“True friends are never apart. Maybe in distance, but never in heart.” ~ Helen Keller.
When diagnosed with multiple sclerosis (MS) 16 years ago, Birgit Bauer felt like no one understood what she was going through. Lost, tired of the questions, and lonely, she shut herself away.
But, there’s an old saying in the multiple sclerosis community: “MS turns friends into strangers and strangers into friends”. It’s a bittersweet adage, but when Birgit turned to forums online, she found so much joy in the second half.
Almost two decades later, she views her new friends as a second family and “pack”. Read her story here.
When I was diagnosed with multiple sclerosis (MS) more than 16 years ago, I felt... lousy.
I felt desperate, frustrated, and alone. The following months were really hard, too. I spent hours learning about MS and how it would impact my life, but explaining it to other people was tough. First off, I had to clarify that MS wasn't a virus, and you couldn't "catch it". Despite my best efforts, I was confronted with a lot of prejudice and misconception - and there was no way I could explain everything in the detail everyone wanted.
It felt like I was a square peg in a round hole... Not quite fitting in. But, as time ploughed on, I found out that I could lead a good life despite MS and the prejudice surrounding it.
I felt like no one truly understood
My husband was with me every step of the way. He supported me through it all, though he often became irritated because he didn't understand my illness. Still, despite his stress, he was the only person who didn't ask me invasive, hysteria-tinged questions.
I'm glad about that. Not only because the questions were incredibly wearing, but because I couldn't answer most of them anyway. My doctor was incredibly busy and didn't have time to answer my questions whenever they popped into my mind. Though my husband was trying, I felt lost, like I had no one who truly understood my feelings.
Related: What MS Taught Me about Compassion
After three months of this, I started to look for other people who understood and could help me. First of all, I saw my psychologist.
This meeting was much needed. In the months leading up to the appointment, I had almost completely isolated myself. I was tired of the questions, the remarks, all the bad feelings. I’d got to the point where I was actively scared of meeting other people.
Once upon a time, I wouldn't have let anyone talk down to me or poke their nose in my business. But I’d lost my confidence to speak up, so I shut myself away.
My psychologist kindly told me that I was still here, that I was worth talking to, and that I deserved to have friends and fun. Deep down, it was something I knew, but it was good to hear it from someone else. Even so, it was difficult to put into practice as I'd been hiding for so long. I decided to start gently and try meeting people online.
Making friends online and knowing I am “enough”
At this time, social media had started gaining popularity, so I started conversations through Twitter and business networks. We shared information (I'm a journalist), and I started learning English again as not much was available in my language, German. Over time, I thought of these people online like friends - as people who could see me, Birgit. Not just as the disease.
Related: Why Online Therapy Suits My Lifestyle with MS
This is typical for us being human beings. We forget that people are animals who long to be in a "pack" and do things together. As John Donne wrote when seriously ill in 1623: "No man is an island, entire of itself; every man is a piece of the continent, a part of the main."
The message was clear even 400 years ago: we're social animals, and not many of us can stay alone for long periods. To have someone by your side means feeling stronger, more encouraged, and gives us the power to move forward.
It took about nine months to strike up genuine friendships with the people I met online. There was hope everywhere: in the Twitter chats, the forums online, and across my business networks. Everywhere, I found people who were willing to talk to me and help. I was encouraged to practise my English, and I learned how to read more articles and MS information online. And, best of all, I had found friends. Or, as I think of them now, my pack.
I’ve finally found my pack
My pack isn't a big one. It's a small group of people I can talk to freely, who I know understand. Sometimes we'll have a "coffee date" via video call, or we'll meet up on an online platform as a group. I consider some of these people my new family - friends who won't push or press when I have a terrible day. They're just there for me, and I'm there for them too.
Best of all, I've managed to meet some of them face-to-face over the years, and hugging them was the most fantastic feeling.
Despite all my online friendships, I didn't feel accepted by those physically close to me. I remember someone coming over one day and saying nasty things about MS right to my face. It was one of those moments where I could have crumbled; I was so tired of the discrimination and stigma. You never get "used" to it, no matter how many times it happens.
But, my pack helped me out this time. I told my friend what had happened; they instantly sent me virtual hugs and insisted I was worth knowing as a great friend and human. Just having a close friend telling me, “you are good as you are,” was enough.
That's why I see and treat this group of people like my family. We share our joyful moments and survive through our bad ones. We cry and laugh together, and we're always there for one another. No one gets left behind. No one has to be an "island".
Life is so much easier now I’ve found my second family
It's impossible to say how important this has been over the last 18 months. As we're not allowed to come together, we've had a lot of online coffee breaks and, sometimes, online cocktail evenings. To be honest, virtual meetings - no matter how good technology becomes - can never replace face-to-face contact. Still, while many people would have drifted apart, we all kept in touch, sending each other the latest information and providing a shoulder to cry on when needed.
Related: How Living with a Chronic Health Condition Prepared Me for Lockdown
We also started sending each other little packages across Europe. If someone said they missed something but couldn't find it anywhere, we'd send over what they wanted from a local shop or online. I sent yarn to a friend in Switzerland to knit a new stole, and when I wanted a particular piece of fabric, I got it. Others asked for cosmetics or a specific food for their cats they couldn't buy where they lived. Of course, buying things online worked in most cases, but sometimes the waiting times were too long or the prices too high. Besides, it was nice to send gifts to friends who'd done so much for one another.
We started calling these packages "little hugs". They were more about the symbolism than the gift - a reminder that the pack was still here, ready to help and to have fun.
And that's why we all need a pack. I cannot describe how much easier life is knowing I have a second family behind me, encouraging me every step of the way.
NPS-IE-NP-00333 November 2021