Learning you have multiple sclerosis is not easy. It’s scary to discover that there is something “wrong” with you and to worry about what your future will hold. This anxiety combined with the fact that you’re now trying to learn about and understand MS, its ramifications, and how you’ll treat it and manage your life going forward can be totally overwhelming.
So, what do you do? Start here:
- Ask Questions: Ask all the questions you have; no question is wrong or stupid. Start a list of the things you want to ask about on your phone or use a pen and paper that you can stash in your bag. Add any concerns as soon as they come up so you don’t forget anything when you see your doctor.
- Find a doctor you love: You will have an ongoing relationship with your neurologist so it’s important to find one you really like. Ask for recommendations from your primary doctor or from friends and family, and do some research of your own. You can search on the internet about different doctors available near your locality. If you’re not sure which doctor to choose, you can read blogs like “5 Things to Consider When Choosing a Doctor” (find the original site here). Try to know what’s important to you (e.g. that the doctor listens and spends time with you; that he or she participates in clinical trials; etc.) and try to find someone who meets all, or at least most, of your requirements.
- Learn about your treatment options: Take your time to make an educated decision on how you’ll treat your MS. Talk to your doctor about your options and read up on his or her recommendations before making any decisions. The Mayo Clinic’s website is a great resource for MS information, as are sites like WebMD, NationalMSSociety.org, and MedicalNewsToday.com. You can also talk to others who have MS and see what treatments they’re currently on or have tried and what their experiences were like. (Don’t know anyone else with MS? Then read the next suggestion!)
- Get support: Surround yourself with people who love and support you. Remember that different people help in different ways (e.g. your mom who is always there to listen, your friends who can always make you laugh, your neighbor who has MS and knows what you’re going through, etc.). There are also many organizations and online communities for people who have MS or have someone close to them who is affected by MS; some great ones include TurnFirst.org, MSConnection.org, www.thisismscom, and sharecare.com. Keep in mind that not everyone will understand what you’re going through, but that does not necessarily mean they don’t care. You might have to explain things more to some people, or ask them specifically for what you need from them. It’s also important to show your support in return whenever you have the opportunity (and are feeling well enough) to do so.
- Have hope: Never lose hope. Hope to feel better. Hope for a cure. Hope for a better tomorrow. Even when you feel totally defeated, you can still have hope.
We asked our Twitter followers to contribute their suggestions for what to do when you’re first diagnosed, and the #1 response was to “stay positive.”
@MustStopMS said: “Stay positive and know you’re not alone. It’s manageable and is not a death sentence. The support you get from other MSers is amazing!”
@keep_smyelin said: “Just Keep S’Myelin!”
We agree that a positive attitude goes a long way. One of our favorite quotes is from Joshua J. Marine, who said, “Challenges are what make life interesting; overcoming them is what makes life meaningful.” Living with MS is interesting, that’s for sure. And learning to live with it — thrive with it! — is a reason to be proud.
What are your recommendations for “first steps” after an MS diagnosis? What are the online and offline resources you rely on most? Please feel free to share your thoughts and tips!