Staying Connected, Staying Sane: Social Media & MS

By Jeri Burtchell

I’ve never been very outgoing. In my younger days, I was the one off in the corner at the party quietly taking it all in. Casual conversation terrified me.

So it should come as no surprise that, in real life, I only have a handful of friends and most of them are relatives. But when I was diagnosed with MS in 1999, my microscopic social world seemed to get even smaller. I’d never really taken into account that George, who faithfully bags my groceries, or Shirley, who has cut my hair for years, were friends, too.

During my first MS attack my legs became weak and totally numb. I was suddenly unable to drive. My car – and the mundane socialization of everyday interactions – came to a complete standstill. That’s when I realized how much I depended on the Georges and Shirleys of the world to keep me connected.

When I was first diagnosed, I was trying to care for my infant son while grappling with symptoms that made every diaper change seem like an Olympic event. The combination of raging MS and motherhood left me physically and emotionally exhausted. I kept that to myself most of the time, not wanting to burden my family and friends for fear of driving them away. I didn’t realize at the time just how toxic fear and loneliness can be.

It wasn’t until I got a computer and the blazing speed of dial up internet that my world opened up. The gray clouds had parted and the rays of friendship – or at least camaraderie – were beaming in. I found people online I could relate to. Others with MS who understood exactly what I was going through both physically and mentally because of this disease. I had only ever met one person with my condition prior to passing through this portal to a whole new world.

That was back when online forums and chat rooms were about as social as it got. But I learned a lot about my disease from the internet, and even more about symptom management and treatment options from others like myself. People in search of friendship and a way out of the isolation that chronic illness so often imposes on people.

Then came Facebook and Twitter, two platforms that have exploded in popularity, giving us access to the world and each other in real time. Empowering people living with chronic illness to find each other and share information, experiences, and photos of our cats. Facebook groups are where I go to learn the latest news of cutting-edge science in MS. Hashtags on Twitter give me an easy way to join conversations about health activism or to follow my passion – raising awareness about the importance of clinical trials.

It was through one hashtag, #whyclinicaltrialsmatter, that I met my new friend Janelle, who lives in Australia. Despite a 14 hour time difference, we Skype on Sundays now, brainstorming how together we might make an impact on the world.

If MS is the worst thing that has happened to me, the internet and social media have been among the best. My computer has enabled me to travel the world from my living room, learning, growing, and making new friends. Social media was the conduit, turning me from a frightened and lonely introvert into a health activist championing for change. I’m not saying that’s how it would – or should – work for everyone. Social media is a tool. With it, you can build whatever connections you like that fulfill you and add to your happiness and wellbeing.

I may not be close to everyone I know through Facebook or Twitter, but they all bring value to my life. They enrich me, they educate me, and they shine light into dark places when I begin to feel like my world is closing in. So while my small circle of family and friends in real life are my go-to connections, I appreciate what the Georges and Shirleys of this world mean to my social health. And I cherish my online friends who are never out of reach. They’re always just an app away.

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Maintaining a Social Life Despite MS

By Meagan Freeman

Sometimes, I avoid social contact because I fear that I might need a helping hand from my friends due to my MS issues, whether that might be a simple door being held open, or help with bags. This need for assistance keeps me from interacting at times, and I realize that I may not be alone in my feelings. This fear of dependence might keep us from enjoying our friends and family, and this is not something we should ever allow. I detest feeling dependent on others, especially my close friends and family. In fact, one of the first thoughts I had after my MS diagnosis was: “I refuse to be someone’s burden!” 

There are little things that happen each day, my inability to open a jar, my inability to drive at night, my fatigue in the afternoons. Then, there are larger issues such as my ability to earn a living the way I used to, the missed children’s football and soccer games due to heat and flares, and the emotional impact this is having on my husband and children. How do you cope with this loss of independence? It is almost inevitable that this diagnosis goes hand in hand with increased dependence on others.

The MS patients I have met in the last few years are just like me. Have you noticed that? Most of us are very strong, stubborn, independent individuals who feel just as I do. I find myself feeling guilty every time I have to ask for help. Apparently, this is my life lesson, my challenge, my big obstacle to overcome.

As I examine my motivations and feelings more closely, I realize that a lot of these feelings are purely my ego. I gain self-esteem from being independent, and I always have. I have had a constant little voice in my mind throughout my life asking “would I be okay if I lost everyone I know?” My answer was always a resounding: YES! However, now I realize that this was not a healthy mindset. Now, I have much to lose.

In the past, I mistakenly saw my lack of dependence as strength. I thought that because I had nothing to lose, I was untouchable emotionally. No one could ever hurt me if I did not care that much. I needed nothing from anyone, and I liked it that way. Boy, was I wrong.

We need to feel supported by others. It is a basic human need.

The question then, is: How do we do this? How do we accept our small (or large) losses of independence? My answer is that our loss may actually be our gain.

When we ask for help we:

1. Show that we are trusting of another human being.
2. Show that we are in need at the moment, but not forever.
3. Develop a bond with another human being.
4. Form the foundation of a long, connected relationship.
5. Create an opportunity to help someone else in the near future.

How great would that feel? To know without a doubt that your friend/spouse/caregiver/family member will always be there for you, no matter what? This is what I gain when when I lose. I may need a hand opening my next jar, but I have a lifelong bond with my spouse that is strengthened each time I need a hand.

Do not mistake needing help for weakness, or independence for strength. Strength comes from building a strong relationship with those closest to you. This is where our true strength lies. Socializing is an important part of our lives, and MS should never stand in the way of enjoying activities with those we love.

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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Making Commitments When You Have Multiple Sclerosis

Before I got diagnosed with MS, I would make plans, mark off the ‘Attending’ box on RSVP’s that I received,and I could also just up and do something if there were plans made abruptly, without a second thought.

That’s not the case anymore; I can tell you that much. And I have a feeling I’m not alone on this…

Now, I’m not saying that since I got diagnosed with MS that I don’t want to attend certain events or go out with friends, etc. I still want to do those things; there are just different circumstances now.

I really hate cancelling plans that have been made or not attending something, (like a wedding) that I had replied I would be attending, but my MS isn’t on a “regular schedule.” I can’t tell people, “Well, on Monday, Thursday & Sunday my MS is not cooperative, so I can only do things on Friday & Saturday.” If only it were that easy, right?

So the reasons I don’t like making commitments to plans are because I don’t know how I’m going to be feeling on that day… or at that particular ‘part’ of the day. I know it seems as if I’m “blowing people off,” but that’s not the case. If I said I wanted to attend something, it means I really did. My MS is just not “allowing” me… Kind of like it’s grounding me, like my mom did to me when I was younger.

So now, when people invite me to do something that evening… or the upcoming weekend, I tell them… “I really want to! But I don’t want to make any promises, so let’s see how I’m feeling when the time comes.” For those people who are close to me, they understand my reasoning for saying this… others don’t, and I have to explain, which can be difficult with people who don’t have MS, or who do not have a lot of knowledge of the illness.

My main message on this blog… “Yes, I want to do things…. But sometimes my MS has other ideas that I can’t control!”

 

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