Month: April 2020

How To Share Your Story As An MS Advocate

A version of this post first appeared in Aby: the app for people living with MS. All opinions are my own.

How To Share Your Story As An MS Advocate

There’s never been a better time to become an MS advocate, influencer, blogger, vlogger, Tiktoker, ’grammer, podcaster, whatevs. Until relatively recently, the main resources for people looking to learn about an MS diagnosis were medical professionals and nationally recognized non-profit organizations. But patients are experts in a way that doctors, drug companies, and MS Societies could never be, and first-hand experience is an essential part of understanding any chronic illness. Social media has become a powerful platform where advocates can help shape an uncensored and nuanced picture of what it really means to live with MS.

MS advocacy and story-telling can:

  • Help family, friends, and coworkers better understand the impact of MS
  • influence donations and social change
  • alleviate feelings of loneliness by facilitating connections with others who ‘get it’
  • encourage information sharing that may be helpful for managing and understanding MS

When you’re living in a body that feels like it’s calling all the shots, it can be empowering to take ownership of your story. If you’re ready to share your unique expertise, here are some of the tools in my MS influencer kit:

Be niche

I may write about diet, fashion, and travel, but they’re all through the lens of MS. I won’t post random pictures of my dog being cute. Everyone’s dog is cute. I will post about the curious reaction I used to get when people saw a disabled woman taking her three-legged dog for a hop. I make my post about MS. If you’ve decided to become an advocate for your chronic illness, you’ve already identified your niche. But, is there a niche within your niche? Perhaps it’s moms with MS, or the LGBTQ community and MS, or paediatric MS. If you can dream it, there’s an audience for it.

We both need a bath.

Find your voice

Develop a strong point of view and lean into it. Figure out what’s unique about you and your story. Be truthful without writing what you think people want to hear–you can’t write for everyone. Authentic stories are better than sugar-coated ones.

Create quality content

Creating excellent content is the most important element to being a successful MS advocate. Be knowledgeable about your subject matter. Fact-check everything you publish, and be careful not to spread false information. Pay attention to grammar and spelling. Credibility is key.

Establish good habits

Readers make better writers. And so does practice. Get in the habit of writing every day, even if it’s just a few lines in a journal. A daily self-analysis can help you become a boss at articulating your life with MS.

Keeping a diary is a great way of documenting your hair transformations while getting your 10 thousand writer-hours in.

Set boundaries

You own your story and it’s yours to tell. The more personal and vulnerable you can be, the more your content will resonate. However, only share what you’re comfortable with. When in doubt, ask yourself, “Would I be okay if this were published in the New York Times?” If you’re not cool with your worst enemy reading about your bladder problem, don’t write about it.

Keeping up with social media, posting, and interacting can be exhausting. Remember that you have a chronic illness and set boundaries. Late night screen time can disrupt sleep and your ability to wind down.

Build your audience

Post regularly. Use hashtags. Be active on more than one platform, and vary your content as much as possible. Look for opportunities to guest blog. Contact MS organizations who are always looking for patient stories. Interview other MS advocates. If they share your work it will drive a broader audience to your channels.

Don’t post and ghost

Engage with the MS community. Comment thoughtfully and regularly on similar blogs and content. Follow back and make an effort to respond to everyone who comments or messages you.

Embrace the competition

There’s only one you. The internet is a vast and infinitely expanding space, and there’s plenty of room for all good story-tellers. Curating and sharing your community’s quality content positions you as an expert in your niche, so share generously. Remember, everyone’s MS is different. You’re not here to speak for MS. You’re here to speak for your MS.

If you have MS, you’ve got a unique story to tell and I want to hear about it! Please share your advocacy in the comments.

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How To Manage Fear Of Worst-Case Scenarios

Fear is a waste of my imagination.

So far the Covid-19 crisis has changed my life in manageable, if uncomfortable ways. The things I’m grieving that in another life might have felt like worst-case scenarios for a world-traveling, party-girl just trying to make the most out of life with MS, seem trivial and first world. Dinners out, some trips, some work, some time with friends, some time alone. The first arms I will run to when this is over will be Jazmin’s, my hair stylist. No offense, Mom. 

My MS is being impacted in ways that will only be measurable when this is long over. I’m missing physio and massage therapy, the DMD I was supposed to start is being delayed, putting some much needed health-hope on hold, and my attempts at fasting look like—well—the exact opposite of fasting.

I already work from home most of the time; and if I’m being real, I was always more of an indoor girl anyway. (Check my complexion for the receipts.) But, The Banker is banking from home now, too, which means I’m scheduling my morning smoothie-making around his Zoom calls and reminding myself that this is ‘our’ apartment, not ‘my’ apartment.

Love the one you’re with, ’cause the alternative is murder/suicide.

For now, I feel like I’ve adjusted to big changes and everything is under control. But if having MS has taught me anything (it’s taught me lots of things), it’s that there’s no such thing as control, change is inevitable, and chaos is normal. 

Uncertainty is something we’ve all dealt with at various points in our lives. But we are not conditioned to embrace the purgatory of not knowing. Uncertainty drives our brains to make sense of what’s going on; and for many of us, a lot of worst-case scenarios are being cooked up as we try to fill in the blanks about what comes next. 

Which isn’t to say we aren’t facing some actual worst-case scenarios right now. 

The majority of my own experience of uncertainty and catastrophic daymares comes from having lived my whole adult life with MS; a disease that can, and has, stopped me in my tracks with things like periods of sudden blindness and degrees of paralysis. Lately, waking up and turning on the news to see what the hell today’s gonna be like, is reminiscent of waking up with MS and scanning my body, checking in to see if I’m going to be able to walk, or move my arms, or see.

Sometimes—not always—but sometimes, my worst-case scenarios have come true. Sometimes, the worst thing I could have imagined at the time, came to pass. Disability stuff for sure, but also personal disasters like breakups, and job losses, and deaths of loved ones. Shit I told myself I’d never be able to overcome. But I did.

I have already survived all of my own personal worst-case scenarios.  

And, I’m willing to bet my doomsday stash of Crémant and Miss Vickie’s that regardless of whether you have MS or not, you’ve survived more than one worst-case scenario of your own.

Every time I start to spiral about what MS is going to throw at me next, I think of the really hard stuff I’ve already adapted to: the lifestyle changes I was convinced I couldn’t handle, but did. Knowing that I slayed those personal disease-dragons is usually enough to convince me that I will be able to do it again, and again. And even when I can’t fully commit to believing in a manageable outcome, I can at least acknowledge the possibility of one, and sometimes, that has to be enough.

If you’re alive today, survival is in your DNA. Humans have been overcoming unbelievable adversity since forever. We can adapt to extraordinary circumstances. If you have MS, you already know this more than most. 

You don’t have to pretend that any of this doesn’t suck. In fact, I’ll say it for you: This straight-up fucking sucks. But, as you wait for things to get better, knowing that they may also get worse, trust in your resilience and ability to adapt. 

You can do hard things. You’ve done them before. 

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