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I feel most isolated by MS when...

@billyshift
I feel most isolated by MS when...

In case you missed it, it was World MS Day on May 30th. The theme for 2022 was 'MS Connections', which is one of the key things we offer as a charity here at Shift.ms.

When I first started working at Shift.ms, despite having MS myself, I was shocked to learn that MSers are two to five times more likely to develop mental health problems, such as depression and anxiety.

To complicate matters, more than 50% of MSers feel isolated as a result of being affected by MS, according to studies. Note the wording there, ISOLATED, not necessarily lonely. You can be surrounded by people who might not understand or are able to empathise. It's not their fault.

Coming back to the theme of 'MS Connections', I have spoken to countless Shift.ms members, buddies and volunteers. They've attested that finding a community of people that understand MS, who have been there before, that's what's made a huge difference in reducing isolation.

So this World MS Day I wanted to dig a little deeper to put a face to the name of isolation. What does isolation with MS look like day-to-day, not simply as a statistic. I reached out and asked Shift.ms members to finish two sentences:

  • I feel most isolated by MS when...
  • Something that has helped me feel less isolated by MS is...

(I'm going to level with you, I didn't expect to get this many responses! This is why we had to post this after-the-fact.) Can you relate to any of the answers below?

I feel most isolated by MS when...

  • When I see others around me being able to chase the career and lifestyle they want and I have to limit myself because of my health.
  • I have to repeatedly explain myself, the condition, or my symptoms to people who don’t (won’t) understand
  • I am not understood and cared for.
  • I am exhausted. The exhaustion of life coupled with the added and very real fatigue of MS.
  • My family and friends don't understand how I am feeling.
  • My bad days are not visible physical symptoms so people don't understand.
  • My body is experiencing a symptom and doesn’t feel like my body.
  • My symptoms make me miss out on hanging with friends.
  • I have to cancel plans because of symptoms.
  • It doesn’t allow to continue with my day and nobody seems to notice it.
  • I feel that I am not able to take part in something, due to my MS.
  • People assume I can't accomplish the same things as able-bodied people.
  • Everyone is doing the things I’d like to be doing e.g. shopping
  • When fatigue hits badly and I have to cancel my plans with friends.
  • I can't join in things.
  • I need support with unexpected symptoms I am experiencing.
  • My partner and our children have days out, I more often than not, have to stay at home because fatigue will ruin it! I can bring my electric wheelchair and then I feel even more isolated!
  • My legs feel like concrete and I can’t function or do ANYTHING and you have no idea how long that symptom will last.
  • I can’t get out of the house like I need to.
  • I can't explain what is happening in my body in a way that others can understand so I just don't bother.
  • I can’t talk to my friends and family about how things really are with my MS because they’re so desperate for me to be ok that I don’t want to worry or upset them.
  • I am tired.
  • My concerns and worries around my illness are not taken as seriously because they are "invisible".
  • People don’t check in with me.
  • I can’t speak to anyone that understands it.
  • When I can't do all that an able bodied person can do! I feel less of a person.
  • Friends want to hang out, but it's too hot for me to go.
  • I feel my walker prohibits me from days out shopping with friends. Plus it is hard to stand for longer than 5 minutes.
  • I can’t seem to get the help I need.

Something that has helped me feel less isolated with MS is...

  • Putting myself out there and being intentional about connecting with others, especially those with MS.
  • Attending an MS support centre and meeting others who also have MS- it’s great to talk to people in real life who get it!
  • Being able to get in touch with other people that have MS.
  • Hearing from others with MS. To know that I am not alone or over reacting to what I'm experiencing.
  • My weekend adventures with my sister to the gym, starbucks, my happy place or getting doing something fun
  • Reaching out to others going through the same thing.
  • Talking about it and having my needs met, all while practicing self compassion.
  • Something that has helped me feel less isolated by MS is the online community of other folks with the disease. I've connected with so many people that are going through the same thing as me, all over the world and it really makes me feel less alone.
  • Having three wonderful cats & online connections with other MSers that understand me.
  • Travelling!
  • When people understand MS, or even me, because I feel that is the best kind of support.
  • Interacting with people through hobbies, like fitness, so the, general, public better understands what MS can look like.
  • Being able to watch the television.
  • Video calls with friends and family, as it means that I can still see them even if I can't go out.
  • My friends who live with MS.
  • Meeting other MSers through Shift.ms & becoming a Shift.ms buddy.
  • Lockdown! Having everyone at home all the time was great! We were all together, safe and enjoying each others company. If I needed to rest, I'd watch a film in bed with one or all of my kids!
  • Joining an online MS support group and also being able to join an in person MS support group in my area that allows you to meet, laugh, talk and cry with other MSers.
  • The great support I’ve found online from people like me and my family of course!
  • Shift.ms!! Love the takeovers and following people who post awesome content and you know they get it.
  • I see my consultant or MS nurse as I don’t have to pretend I’m ok or not scared with them.
  • I walk on the sand.
  • I make MS "visible" by advocating for myself and my fellow MSers. I use social media to connect with the MS community, raise awareness, initiate conversations and spread the word around my network.
  • I’ve learned that is ok to slow down & give up my FOMO.
  • The internet.
  • My friends accepting I use a wheelchair x

What would you add to this list?

A couple of things before we wrap up:

Please check out our #WorldMSDay video where we asked MSers to film their answers to camera:

Finally, I'd love to continue this conversation, so here's a link to a post I made where I asked the same two questions on Shift.ms. See you on the other side.

About the author

@billyshift

I’m Billy, 29 years old and currently live in Shropshire, UK. I was diagnosed with RRMS in 2019 and I’m currently taking Ocrevus. I study part-time with the aim of qualifying as a counsellor. I love playing guitar and usually spend my weekends hiking. I enjoy working with the MS community as Communications Officer here at Shift.ms. I live my life in a series of much smaller windows now. I’m really excited for what the future holds. If you’re interested in volunteering, creating content or just want to ask me a question feel free to DM me 👍