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Benefits of Engaging with Other MSers

Fitted

Thursday July 23 2015 11:59 AM

Recently I've had a few young people who have been recently diagnosed with MS get in touch. I'm always happy to hear from people, because on of the most common themes I see emerge when these young people start to open up is the isolation they feel post-diagnosis. It's hard to be the only one in your family, your friends, and your peer group that has MS. It sometimes feels like nobody understands.  

I can't recommend engaging with others in the MS community highly enough. I was diagnosed in my early twenties. I will admit, although I accepted my condition, I did not want any interaction with MS 'groups'. I felt that if I went to an event, to a meet up or coffee morning, that I would be faced with a visual reality of what was in store for me in the future.  

Diagnosis can be a very scary time and that 'newly' diagnosed stage is sometimes hard to cope with. I felt I did not want to walk into a room of people who were more affected by MS than me. As scary as things were, they were in my head and I had no visual confrontation with the disease as such. I knew the possibilities and I didn't wish to have anymore to do with what could happen. I guess I was always afraid that going to meet other people with MS would be too real. It would bring it all home, and instead of the blissful ignorance I had, I would have to face the facts.   

Initially, I wanted to keep things in, I didn't feel like anyone else would understand how I felt. None of my friends had MS and despite their best efforts they would never see things like I did. 

After sometime I did feel it would be beneficial to meet other people with MS. Human connection is hugely important and there is great comfort in knowing that there are other people in situations similar to your own. So as I spoke to more people I began to crave more and more. I met more people, of various ages, with various symptoms and levels of ability, and I saw that it's not only the people who are doing well and keeping symptoms at bay who are strong, it is also the people who are carrying on and living life regardless of the symptoms they may be experiencing on a daily basis. They have so much more to cope with and they do it and carry on with their lives too. 

It occurred to me that I was the weak one, the one who didn't want to interact with these amazing people, out of fear, fear of what the future has in store. I can honestly say that if I follow the same disease path as many of the people I have met, and deal with it as gracefully as they have, then I will be incredibly proud of myself. Everyone has a different disease path, but we are all on the same journey. Sharing that journey with others makes it so much easier. You can learn so much from a seasoned traveller. 

I think if I was living with MS in isolation from other MSers I would still be scared of the future. But confronting that fear has only made me stronger. I want to keep myself as well as possible, and listening to the advice of others (and separating the good from bad advice) has really only served me well.

I think it is crucial for young people to engage with other young people too. We are all in a similar stage of life, so themes are relevant to us all. We can share with, learn from and help each other. There is strength in unity and what I would like is increased visibility of younger people with MS. When the average person thinks of someone with MS, I think they immediately picture a 40/50 something year old, but in reality there are lots of young people who live with MS and by increasing the visibility of that group, we can do so much. By acting as a united group we can strive to achieve change where WE need it, support with education and training, family planning, employment, mental health services, insurance, to name but a few issues. How can we expect to have services for younger people if we don't make it obvious that we exist? We need to clearly state what it is we need. What do you think we need to try focus on changing? What would benefit you as a person living with MS?

We are all strong, none of us are better than any others. We all have our strengths and weaknesses and we can learn from each other. My advice is to engage with others on a level you are comfortable with. We don't need to dwell or focus on the negative possibilities. We just need to support each other, and that support happens so organically when you engage with others.  

Further reading

Author: Aoife Kirwan

Tags: ms, youngpeople, meetup, community

Comments

Declan

Thursday July 23 2015 16:40

Loved it Aoife. Well said. I stayed away from MS groups for the same reasons, totally understand.

Joan Jordan

Thursday July 23 2015 19:24

Together- we are #strongerthanMS Aoife!

Laura

Friday July 24 2015 09:27

Great blog aoife, 31 going on 32 which is also a milestone for being nearly 2 years diagnosed. Strength in numbers :-)

Aoife

Friday July 24 2015 10:52

Thanks for your comments everyone. Here's a link to a publication from MSIF which focuses on young people :) http://www.msif.org/wp-content/uploads/2014/09/MS-in-focus-21-Young-people-English.pdf

Willeke

Friday August 07 2015 19:57

I'm a bit late commenting on posts but finding great stuff in them once again!

Like you Aoife and Declan, I stayed well away from others when I was first diagnosed. That was until I went to a Newly Diagnosed Day, and met so many fantastic people. I didn't have to be afraid anymore, as I knew there would be people out there who understood perfectly.

In that regard I honestly and utterly believe that Newly Diagnosed Days are essential, just to break that barrier between trying to do it on your own, versus realising that yes, there is indeed strength in numbers.

Emma Rogan

Monday September 07 2015 13:51

Nice post Aoife; you've captured many of our experiences.

For anyone wanting to meet other MSers face-to-face, join the Dublin MS Meetup Group http://www.meetup.com/Dublin-Multiple-Sclerosis-Group/

We know MS can be difficult but we're using it as motivation to get together and make a positive difference in our lives. This group is for people who want to meet new people, learn new ways of managing a 'new normal', build friendships, take part in activities, share stories, experiences, develop a community and enjoy time together. Get in touch if you have any questions or comments.

Emma

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