I’m a few years into the MS game now, and I often find myself exchanging e-mails with people who have just been diagnosed. I never hesitate to extend a helping hand and a few words of advice, especially since I was on the receiving end not too long ago. I’ll never forget the people (some of whom were complete strangers) who were kind enough to talk to me, and help me through that initial period after diagnosis. My hope is that I can pay it forward as much as possible. Here are my 5 favorite pieces of advice for someone who is newly diagnosed:
Knowledge is power! Take some time to research MS, but tread carefully. Stick to reputable websites, books, or get information from your provider. Websites like the National MS Society, MedScape, and MultipleSclerosis.net are great places to start. If you stumble on a forum or a website that seems less-then scientific hit that back button, fast! I’m obviously biased, but the Multiple Sclerosis 101 series is also a good place to start deepening your understanding of what is going on with your body.
2. Assemble Your Dream Team
It takes a village to live with a chronic illness. Make it a priority to find a provider that you like, and that you trust. If you have access to an MS center and/or and MS specialist then run, don’t walk, to the nearest one. If you aren’t sure if there are any MS specialists in your area you can contact your local chapter of the National MS Society and they can help you find someone. Your MS provider is only the first step though! A good primary care provider is also an absolute necessity. On top of that you will want to get to know and love any other specialists, nurses, social workers, and/or therapists that you may need. My dream team seems to expand every year, but they keep me in the best condition possible and I am thankful for each and every one of them.
3. Set Some Ground Rules.
I’m not going to sugar coat it, there are some rocky times coming in the near future. You are going to have to dig deep and find your inner MS warrior. This is an incredibly personal process, and I can’t tell you how to do it. All I can do is tell you what I did, and help spark some ideas. First I made a list of 6 mantras or “rules” that I try to live by. Next I started volunteering with the National MS Society which gave me a fantastic positive outlet, and helped give me purpose during a really tough time. I also wrote myself a letter to read on a particularly rough day. My MS mantras and that letter often bring me comfort when I need it the most.
4. Reach Out
I think most people would agree that the MS community is made up of a pretty phenomenal group of people. Thanks to social media there is a huge community of people who understand what you are going through right at your finger tips. Reach out to someone, and start building a community that you can turn to when you just need to talk to other people who “get it”. However, in my opinion you should make sure those people are positive influences and that after speaking with them you feel better and not worse. If you aren’t sure where to start, my door is always open.
5. Be Gentle With Yourself
You did nothing wrong, and you certainly did nothing to deserve this. Take care of yourself, you need it right now. Eat well, sleep, relax, do things you enjoy, interact with the people you love. You will feel like you are on a roller coaster, you will find yourself constantly thinking about it, and you will be faced with challenges that are not fair. Go out of your way to do something nice for yourself, you deserve it.
If you need a friend, you’ve come to the right place. Each and every one of us here at MultipleSclerosis.net have your back, and we all wish you the best!