Young People

These days life as a young person is not without its difficulties. With the economic times we are in, life is hard. Careers are more difficult to embark upon, housing is harder to secure, education isn't as accessible as young people would like. These are issues that can affect people on every level, add a chronic illness on top of that and many people would think life is impossible. Well not the young MSers of today, I hope. While it can be difficult to live with a condition like MS, it doesn't stop anyone from achieving the same things as others, you might just have to go about it a different way. I have spoken to people with MS who have told me that once they received their diagnosis they decided to forget about certain things that they had hoped to achieve in life. The thing is, you can still reach the goals you had set for yourself, and you may just have to rethink how to get to that end point. Sometimes it is the journey you were not expecting to have to make, ends up being the most beneficial, the most memorable.

It can be difficult to accept a diagnosis, especially when you have so much life to live. In my experience, being diagnosed as I finished third level education felt as if I was being stopped before I could even get started in life. Looking at the long road ahead when you are a young person, it is hard to imagine life with an illness like MS. It can be a very difficult time and in my opinion there needs to be more of a focus on mental health at this point. A diagnosis like this can completely take you by surprise and there is no manual to show you how to deal with the feelings and emotions that come with it. Fellow MS and Me blogger Willeke recently posted a blog with contact details for various mental health services, which I think is a great resource to people who may be in need of support. Life goes on regardless of what obstacles come our way, and hard as it may be, accepting, adjusting and continuing is the way forward.

An issue I feel needs to be addressed is decision making regarding treatments, or whether to take a treatment at all. When I was diagnosed, I found myself reading through treatment options with no clue what I was looking at. It was extremely difficult to make a decision. I was coming from a background in art and had no frame for reference when making decisions like this. You can sometimes find yourself emerged in an ocean of scientific terms and medical jargon that is incomprehensible. It is a tough and often very frustrating time. There are a few pieces of advice I would offer anyone looking at treatments and trying to make a decision. First of all take your time. Remember that taking a treatment is a choice, and not everyone decides that treatment is the right option for them. If you decide to go ahead with choosing a treatment then read the information you are given, read it critically. Write a list of any questions you have and then set about having them answered. Talk to your healthcare team, ask them questions. Research online, but try to avoid horror stories. Read, but bear in mind that ultimately the decision is yours, use your reading to inform your thinking but certainly don't go online looking for the answer. MS is different for everyone and there is no typical path MS follows, so in turn there is no particular 'one fits all' treatment. Be careful when sourcing information online, there are lots of people who like to share their horror stories; try not to engage in that. Use reliable sources, like society websites, online journals etc. Try not to read too much into things that may never happen to you.

If any of you have more advice please feel free to comment. The space is yours and that is what community is all about. We embrace readers using this space to interact and share.

There are also plenty of supportive and helpful online resources. I found shift.ms extremely helpful as an online support network. For those of you who are not familiar with it, shift.ms is a social media website for young people with MS. For me it was my first real connection with the online MS community. Something I greatly admire about shift.ms users is their knowledge base. Users can post / ask questions and other users will respond, interact and answer. It is community-regulated in a way, as users pick up on false information and tend to be quick to set each other in the right direction again. It is important to know you are not alone, and websites like shift.ms provide a safe online environment where MSers can reach out to each other. Information and experience is shared to help strengthen the community, users actively contribute to discussions and empower each other. I would strongly advise those of you who have not come across it to give it a look. Do any of you have other online resources you find helpful?

Remember that life is bigger than MS, you are capable of so much and you should not let anything, even something like MS stand in your way. Some things might be harder but it does not mean they are impossible. You should not let a diagnosis define you. You are so much more than someone with MS. It is a very small part of your life; you are the one in the driving seat.

Young People