Dear Newly Diagnosed,
Are you relieved? Scared? Frustrated? Overwhelmed? I remember vividly my early journey with “what is going on” questions to finally, six years later receiving my diagnosis. I was relieved I had the answer I had fought so hard to get, however there were also many changes coming; decisions to be made; uphill battles to still contend with. That was 2006.
Now I am so much better equipped to deal with this disease. No one can tell you how to feel, how to cope, how to handle your unique situation. However, take comfort my friend, there are many others out there going through this as well. MS knows no boundaries, it does not discriminate based on religion, politics, race, gender, age, or sexual preference. The biggest mistake I made, in retrospect, was thinking I could champion on as if nothing had happened, on my own. I was a strong career woman, handling a huge job, two children, managing a household and had been dealing with these symptoms for over six years. I got my answer. I buried my head and moved on.
The best advice I can give, many years and a whole lot of wisdom later, is find and build a solid support system. Use a whole-body approach, aiming for emotional, physical and spiritual health. Strengthen these in whatever way works for you. Do not let anyone tell you what is best for you. Work with friends, family, MS Support advocates, your medical team, and spiritual advisors to find that special formula that works to keep you going: happy, healthy and achieving the best quality of life you possibly can.
Don’t stop! Accommodate your symptoms by adjusting your activities, but don’t stop living. For me, I had to find new ways to do the things I loved. I called it reinventing myself! Honestly, it was frustrating at times, but also rather fun. I could finally prioritize what was most important in my life and focus on lining up my life style with my priorities. How often do we get to do that?
I highly recommend you, your family, your care partner or caregiver reach out to groups like ours for advice, support or assistance, and most of all, for a community of folks who “get it”, no matter what your symptoms are. We celebrate our uniqueness, not only in MS symptoms and course of disease, but in our individuality and strengths. We offer this encouragement to all affected by MS, not just the diagnosed.
We here at the MSAV hope you and your support system connect with us as you start this journey. We understand it will not be easy, but we have learned to laugh together, educate and empower ourselves, and most importantly, support each other through it all. We are a strong team of advocates fighting with you, beside you, behind you: Your Bridge of Hope!
Co-President/MS Alliance of Virginia with MS
If you have recently given a diagnosis of MS, you are probably overwhelmed, full of questions, not sure what to do next, and feel like you are swimming upstream. Here are some places you can turn for information that can start to help you sort through those questions and give you answers.
- Learn about MS: This website, the National MS Foundation, the National MS Society , MS Association of America (MSAA), and MS Views and News websites are all trustworthy sites to go to for accurate information on the disease.
- Learn about Treatment Options: Finding your care team, the comprehensive medical team who will care for you in the ongoing years is a critical piece of the puzzle for you. Make sure you interview your neurologist, that you find someone you can relate with, whose staff you can work with, that understands your needs and wishes and that above all, you can communicate openly with. With that in place, the discussion about which treatment options are best for you will go much smoother. MS is different for everyone, so there is not a one size fits all solution. Having a free-flowing open communication path between you and your neurologist and the rest of your medical care team will be paramount. Work hard to establish that.
- Reach out: There are support groups in your area. You can find these by looking at any of the websites listed above. Most groups offer education, comradery and empowerment and can be a great source of information. Make use of resources in your area, either online or in person, self help or group, to build connections with other peers. There is strength in numbers!