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Challenges Facing Young MSers

Fitted

Thursday March 20 2014 11:00 AM

While in Barcelona the topic of MS and Young Adults was discussed. It was interesting to me, as I am the youngest person I know with multiple sclerosis. I know some very inspirational people with MS who happen to be older than me, but I sometimes feel as if my concerns as a 26 year old are irrelevant to many of the people I know with MS. Maybe, because they already have established careers, are married, have bought their own house and achieved many of the things that I find I am holding myself back from. I'm sure there are people who are older who experience the same concerns as I do. This blog is for anyone who reads it and anyone who relates to it!

As a twenty something, you're possibly taking some of the biggest steps and decisions of your life. You could be choosing to go to/back to/ continue college. You could be stepping from education into the jobs market. You could be deciding to start/add to a family. You could be buying your first house or moving out of home for the first time. These steps are not small for anyone. As a person with MS, I have experienced some of these steps and I have to admit, having MS has been a factor in decisions I have made and am likely to make in the future. On a fact sheet from the conference provided by Novartis, it states that only about 50% of people with MS will be employed 10 years after diagnosis. I am three years into my diagnosis and I am doing a post-grad.  After this I want to do a masters, so that will bring me to 6 years post-diagnosis, which would mean I have maybe 4 years to work before hitting this 50%? I don't think so! This is one of the factors I had to consider when deciding on a post-graduate. I decided to be practical and look at what the best option was for me, a 26 year old with MS who has no intention of leaving work at 33! So, all things considered I decided to go for psychotherapy, it seems to me to be the most interesting and 'future-proof' option of the possible careers I was interested in persuing. MS was a factor, it didn't stop me from doing anything, but it informed my choice.  

Having MS can have an affect on personal identity. For me it has, I sometimes feel like it is extra baggage to carry. I sometimes feel like I don't have as much fun as I used to. When I go out, more often than not I want to leave early in the night because I am too tired. Ideally I would need to stay in bed until about 3pm the day of the night out, get up, give a few hours to the day, get ready and have enough energy for the night, but that is unrealistic. It has an effect on my social life and sometimes people don't understand that my fatigue is more than just ordinary tiredness. MS has also affected what was once my favorite hobby… shopping! I used to love nothing better than going off to the shops for the day, now I see it as an absolute nightmare.  Queues, fitting rooms, waiting, walking, carrying bags… an hour in and I am out!! I get so tired that shopping has turned into something I absolutely dread! Closer to the summer I plan to blog about music festivals, I have some magic tricks on how to keep them an enjoyable experience even with MS.  
 
When you are in the early stages of seeing someone, when do you tell them you have MS? How do you decide when it's the right time to have that conversation? If you say it too early will it be too much to soon, if you say it too late were you withholding it from them? Should you have told them earlier? It's a maze of a decision!
 
I have a wonderful little boy, who was already in my life when the MS diagnosis arrived. Having MS does weigh on my mind when thinking about the future and the possibility of having more children. I have a responsibility to my little boy, I have to stay as well as possible for him as well as myself. If I decided to have another child I would have to stop my treatment, I would be at risk of relapse, I could give MS the chance to damage me. I don't even want to think about the possibility of MS having a hereditary link! I'm not saying I don't want to add to my family at some point in the future, but I feel there is so much for me to consider because of the fact that I have MS.
 
Independence can also be an issue. According to another fact sheet from the conference, one third of those who do not receive or accept treatment may require a wheelchair within 20 years of diagnosis. Each to their own in the decision of drugs or no drugs. For me, I felt a little safer going on treatment, but I can see the reasons why people chose not to. With full mobility and being on treatment I see how my independence is affected. Fatigue is a big issue for me at times and when I am not able to do my basic everyday tasks, I have to rely on others to help me. I think one of the most important things you need when living with MS is a good support network. I am blessed when it comes to this. My family are always willing to help me out if I am having a day where I'm feeling a bit 'zonked'.  
 
As a young person with MS, I do feel like it has a big influence on my decisions and life. However, as it has been pointed out to me on more than one occasion, these things might never happen. I might work until retirement age. I'm not necessarily missing out on anything when I go home early on a night out. I could add to my family and not relapse. I could never need a wheelchair. Anything is possible, nothing is predictable and for now I will embrace shopping online!  
 
I mentioned earlier that I am the youngest person I know with MS, so it would be of huge interest to me, if you would comment with some of the things that affect or have affected your life as a young adult with MS. How does MS affect your decisions at this point in your life??
 

Author: Aoife Kirwan

Tags: youngpeoplewithms, ypwms, young, ms

Comments

Aileen M

Thursday March 20 2014 13:36

Hi I'm 23, I was diagnosed with MS last year after symptoms returned from a year before. At the moment I live in my family home... alone, my mother is in a long term care home with a brain injury, I have to find her a different place for her and may have to sell her family home. I'll be basically homeless, I'm in my 1st year out of 2 years in college it is stressful but just have to pick up and carry on I suppose. Thanks for reading.

Niamh

Thursday March 20 2014 13:54

Hi Aoife
Great post, a lot of issues raised that still apply to me at 33. A lot of the time I can leave MS to one side, and get on with day-to-day life, but it's the longer term things that keep me awake at night. Although nobody knows how life is going to pan out, it can be scary looking forward to the "unknowns" of MS.

Thanks for sharing, Niamh

Linda

Thursday March 20 2014 15:09

Hi, I'm 8 yrs diagnosed, I retired from work at end of last yr. I was a civil engineer. I retired because of cost of childcare. If working I also would have been living 2 hrs away from my husband. Work was not worth my children growing with a part time father all because I was too stubborn to give up a permanent job (as I reckoned I'd never get another because I have MS.) I think I have de stressed my life now and am able to concentrate on more important things. Reasons and decisions will changed over time with circumstances. I hope to be able to get a job in years to come when my 3 yr old and 19 month old are in less need of me. Linda.

Deirdre

Thursday March 20 2014 18:55

Hi guys I'm 28 and diagnosed 1.5 years, just after my wedding, getting my 1st relapse because of the stress of a wedding and the heat of the honeymoon was a blessing really because I've been having symptoms with years undiagnose, I'm 2nd generation with it, I might have gone a few more years undiagnosed and untreated. And questioning my sanity really!anyway babbling on we are hoping to buy a house because we want stability and to start a family but the banks are making me and us feel like second class citizens because they are making a big issue of the fact that I have invalidity pension due to my health, I thought I had this forever but the banks seem to think it's not reliable as I could loose it tomorrow, so I'm freaked out and feel discriminated against,say a salary counts even though you could get fired tomorrow but my pension doesn't??! Doesn't make sense or seem fair to me and as a result we feel like we don't have a right to a home. But we'll keep trying and hope we find a bank that doesn't punish the disabled. Rant over lol

Joan Jordan

Thursday March 20 2014 21:01

Great blog Aoife! Can't wait to read your magic music festival tips. Hurray for online shopping!!!

Clare

Saturday March 22 2014 15:31

Hi aoife, I found this really helpful and relevant as a 21 year old, diagnosed 3 years ago at the age of 18. I have a lot of the same thoughts it definitely does affect the decisions you make and always is a factor you have to consider, which can sometimes be frustrating as you see so many people your own age without a care in the world, but then I look at the positive side of it being diagnosed younger I got on medication quicker. I chose to go on medication to give myself the best chance at prolonging another relapse. With my new partner who I have been with for a year now, I told him when we we transitioning from the seeing each other stage into the serious stage and he took it great couldn't have asked for a more supportive boyfriend. I relate fully to Niamh I find I worry a lot about what's going to happen as in longer term things, I can deal with day to day side effects just about, the tiredness can take its toll on you especially when I am back from work after standing all day I find I am exhausted and I'm SO fatigued that I don't have energy to then socialise that evening, which is when I get frustrated with myself and wish I had more energy sometimes but it's the unpredictable nature of ms that scares me. I know whatever happens I have an amazing family who are always there for me and have been amazing since day one which helps a lot :) here's to online shopping :)

Lucina

Saturday April 05 2014 00:41

Well said Aoife. Statistics are depressing - but remember, you can always be the other % After you write the festival tips, could you come up with shopping tips ?

Natasha

Wednesday April 09 2014 17:12

Hi Aoife,

Im 23 and was diagnosed last year and decided to go on treatment straight away to try and delay any progress of the MS.
I find your blog really helpful, its only now that I have build up the courage to actually go onto any websites or blogs because like your the statistics are always in the back on my mind.

Its just great when reading these blogs that I'm not alone and don't feel like I'm whinging all the time and it only seems to be people with that suffer with MS actually know what I'm talking about and how I feel.
So for that I thank you & look forward to reading more, especially the festival tips cause I've quite a few things coming up in the summer lol!

Aoife Kirwan

Wednesday April 16 2014 21:54

Thank you all for your lovely comments. I'm glad that my ramblings mean something to you! I will get writing the festival tips soon. Being a young person with MS is challenging and I'm glad that there are more young MSers coming on to read these blogs!

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