GUEST POST: Using Social Media to Connect With Other MSers

Guest post by Debra Robert, contributor to the Canadian NewLifeOutlook MS website.


Twelve years ago I found myself at the bitter end of an unhealthy and tumultuous relationship.

I have always been pretty darn good at being alone. I like my own company. After a couple years on my own however, I began to lose sleep. I’d lie awake in bed wondering if I was to be alone for life.

Around that time, I instinctively began reaching my hand out the window beside my bed. I felt the need to feel the evening air, to play with the weight of the wind on my fingers. I consoled myself imagining that the gentle breeze that wrapped around my hand was actually the touch of a caring friend. The night air was my conduit to the rest of the world, and the feel of wind brushing against my hand got me through difficult nights of fitful unrest.

I have been happily married for four years now, and I have a strong sense of self and place. But when I was diagnosed with multiple sclerosis (MS) in our first year of marriage, I could feel myself slipping into a place of fear and uncertainty. Not wanting to be too much of a burden to my new husband, I subjected myself to wrestling the plague of symptoms and uncertainty largely on my own, often in silence.

Eager to try and come to terms with MS, I attended a support group. The people in the group were wonderful; the camaraderie was tangible and the discussion was lively. Nevertheless, I could not help but feel out of place.

I’ve been a runner, a tennis player, a motorcyclist and a painter. I have always gravitated toward activities where I could do my own thing while in the company or vicinity of a group. Support groups, as wonderful as they are for many, simply did not suit my lifestyle.

It was around this time that I began surfing the net daily. I sought out everything and anything regarding MS and I learned a great deal in the process. The most profound lesson was that I no longer needed to feel isolated or alone with MS.

A Place for Each of Us

With just a bit of searching, you will find all kinds of social media outlets to help you form a personal and meaningful network. There are reputable blogs and websites where you can talk about your MS symptoms and health concerns and hear back from people who really do understand.

Among these are topic-driven communities where caregivers, patients and families, or any combination therein, can engage. Updates and information on research and advancements are plentiful through the many associations that support MS population. And more and more caregivers are opting for open, comfortable forums for their patients to connect online.

Social media can empower you, enrich your life and provide a strong sense of camaraderie, especially the outlets, or parts of outlets, that serve a select population, as in our MS community. You can connect to share ideas and lifestyle modifications, or simply log in to not feel alone.

The beauty of social media is that there is no right or wrong way to engage. For me, writing about my life with MS for NewLifeOutlook and hearing back from readers is wonderfully cathartic. This type of social media engagement is perfect for me. It satisfies my independent streak as well as my wish to be part of a greater group.

10 Reasons to Use Social Media to Connect With Other MSers

1. You choose your level of engagement. There are no expectations. Nothing is demanded of anyone. It is your choice when it comes to commenting, responding or sharing.

2. You can raise awareness. We don’t all need to be activists, but we can make a difference for family, friends and acquaintances. They can learn a little more about MS through everyday photos, status updates or links that we share from others on virtually any type of social media.

3. Communication with healthcare providers. You and your family can benefit from an enhanced and ever-growing flow of communication among healthcare providers, patients and family members. No one need remain in the dark.

4. You can remain anonymous. Anonymity can make it easier to connect in terms of asking for or offering opinions and information. Things that may feel taboo or too private can be voiced without concern of judgment.

5. Encouragement and support. When you start thinking ‘I can’t do this’ someone out there will keep telling you, ‘yes you can’.

6. Have a laugh. I often use my sense of humor to cope. Laughter is a great medicine and I self-prescribe it often. I love discovering a new phrase or statement that only MS’ers will get. “Hallway pinball” is my current favorite. It perfectly depicts how I get from room to room in my home when my legs are uncooperative.

7. You don’t have to hit send. I’ve written many chat responses or forum entries that I simply never sent. Sometimes writing or typing out fears and concerns is enough to ease your mind or work through an issue.

8. You have something to look forward to. Signing on to familiar pages and forums can often lead to hearing from ‘familiar faces’. You may find you develop a bit of a kinship through chat rooms, forums, pages, etc.

9. Ask and you shall receive. When asking and answering questions on social media, there is no telling where it may lead. Sometimes the responses are surprising. Sometimes topics take on entirely new directions and open new pathways to better ideas or ways of living.

10. 365 days a year, 24 hours a day, someone out in the world is ready to listen. You can reach out on any subject or for any reason any time, day or night. Sometimes, just knowing that so much is out there, is just enough.

Things to Keep in Mind

With all that said, there are also some concerns to keep in mind. Use caution when sharing personal and/or private information. There is no across-the-board accountability when it comes to data collection or dissemination. And keep in mind there are no guarantees of authenticity and/or accuracy for information shared on social media platforms.

A Sense of Connection

I think back to those lonely nights when I’d reach out to the wind. I suppose I was on to something. I needed to feel connected and not so alone. I was comforted by an unseen but tangible sense of connection at my fingertips.

I still reach out. I am still comforted. But now I know, someone, somewhere will reach back.

ms-communityDebra Robert was diagnosed with MS on Christmas Eve, 2014. Now unable to work in the field she’s loved, Debra is determined to live a quieter, more internal life with MS.

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