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5 Pieces of Advice for the Newly Diagnosed

5 Pieces of Advice for the Newly Diagnosed

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:

1. Learn

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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Kym
    1 year ago

    I am newly diagnosed, since yesterday!
    (5/10/18)
    This article helped and this site is great. Thank you!

  • spacecake
    9 months ago

    Newly diagnosed (10 wks ago! And right after you 7/28/18 ) – I’m also so thankful for this article…

  • CindyG
    1 year ago

    I was diagnosed in January 2018 – after many, many years of searching for “what is wrong with me?” Reading through some of the articles has been overwhelming and yet enlightening at times. So many things add up now! I had no idea some of the things happening to me through the years were actually symptoms of MS! Your article is perfect – I was starting to feel so confused about next steps. This helped me calm and focus. Thank you! Cindy

  • Amanda
    3 years ago

    Thank you for sharing. I was just diagnosed with MS before Thanksgiving and it is nice to know there r people that care and I can relate to.

  • Kelly McNamara moderator
    3 years ago

    Hi Amanda. Thanks for the comment and for being a part our community! If you ever have questions along the way or just looking for a place to chat, community’s always here. Wishing you all the best! – Kelly, Community Manager

  • PS98107
    4 years ago

    All very good advice! Learning and filtering is a key. When I was diagnosed in 2002, research was one of my first priorities; however,answers are subjective in that for every piece of good information on the Internet, there is a plethora of false information and meds and treatment are not one-size-fits-all. In addition to your advice regarding MS, I’d say, to quote from the movie Galaxy Quest, “Never give up. Never surrender” to MS. I lost the ability to play musical instruments let alone put on my own socks, due to muscular weakness. I kept trying in spite of it and months later got my strength and ability back. How? Via a real and natural process the brain uses to heal itself when injured called Neuroplasticity AKA brain plasticity. Now I’m sharing that with other musicians and it works for anyone. Proper nutrition and exercise were also key for me. All humans run off the same natural chemicals in varying degrees and we get those from food. A lot of processed foods however have unnatural combinations of chemicals and our immune systems reject them.

  • But You Look So Well
    4 years ago

    GREAT rules! I was diagnosed in 1981, but I got sick a good long time before that, and I’ve only been on treatment since 2000 (had to get over fear of needles before I started.) To me your last rule is the most important. You really did nothing to deserve this, no matter what you think. illness doesn’t seek out the worthy and strike; it took me YEARS to figure out that I got MS because illness is random. I was standing ni the wrong place at the wrong time. I no more deserve MS than I deserve having married exactly the right man, the one who always reminds me that he vowed to stand by me in sickness and in health. The only thing I am responsible for is to be the best MS person I can be, which for me means to be as active as possible — I genuinely feel much better when I exercise, and to extend the same kindness and support to other people that I extend to myself. Oh yeah, and take my meds on time and cheerfully!

    Thank you kindly for sharing your mantras with us. Multiplesclerosis.net is the BEST onlne support community I have found in the 37 years I’ve been living my best with this disease.

  • Jamie R.
    4 years ago

    I was diagnosed 6 months ago and these are all very good pieces of advice. Until just recently, I felt I was on a rollercoaster that I couldn’t get off of and I had no idea how long the ride would last. After doing a lot of research, getting a treatment plan in place, seeking out counseling and joining an online group: I am finally at a place where I am being gentle with myself.

    I know there will still be challenges to face in the future, but I feel I am much better equipped to take them as they come and not let them take the drivers seat in my life.

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