We all respond differently to information about our health. After learning you have multiple sclerosis (MS), you might be stunned, scared, or even relieved to have a new diagnosis that explains vision problems, dizziness, or other neurological symptoms. No matter what you’re feeling, you’re not alone. On MyMSTeam, there are thousands of others who have been in your shoes.
You can’t figure out everything about MS at once, and you don’t need to. Taking small steps to adjust to your new reality can be empowering in a time of major change. According to the American Psychological Association, active coping strategies like getting organized and planning for your MS care can improve mental health and emotional well-being.
It’s normal to feel out of control when you first learn you have MS. You may have a pile of pamphlets crowding your kitchen table and a head full of questions you forget the moment you set foot in a neurologist’s office. You can begin to tame the chaos by implementing simple organizational techniques to create space for this new aspect of your life. Here are nine steps to consider as you begin your journey with MS.
Storing all of your printed doctors’ visit summaries, pamphlets about MS care, and other resources in a designated spot can create some order and help you find information when you need it. You don’t need a fancy filing system — a kitchen drawer, an old binder, or simply an orderly stack on your bedside table can make a big difference. In addition to helping you keep track of important papers, there is evidence that controlling clutter is associated with better moods.
Keep a list of questions for your health care provider in a dedicated notebook or on your smartphone. Jot down your questions about symptoms of MS, treatment options, and side effects as you think of them. Bring your list to your appointments so you can remember what to ask. Plus, you’ll already have a place to write down the answers.
If you already rely on a digital calendar or paper planner to manage work and family obligations, stick with that method for managing your new doctors’ visits. If keeping a calendar is new to you, consider using what you’ve already got at home, such as a grocery list notepad or a piece of paper and a magnet on the fridge. You can also ask your doctor’s office about phone call or text message reminders to help you keep on top of appointments.
Using an old-fashioned pill organizer is a great way to keep track of an oral medication regimen. You can also use a paper medication tracker. If you’re comfortable using a smartphone, consider downloading a medication-tracking app to manage your treatment schedule.
It can feel overwhelming to reach out after receiving an MS diagnosis, but you don’t have to face it alone. Support from loved ones, family members, your health care team, and other people with MS is crucial as you embark on an MS treatment plan. You may need to let go of some tasks and obligations as you adjust to your new normal. Consider how you can minimize stress and overactivity in your day-to-day life. Who might you ask to help with some of your duties?
You may not be ready to talk about your diagnosis with your loved ones right away. You also may not feel comfortable joining an in-person support group. That’s OK. Connecting with members on MyMSTeam can be a first step toward finding support. Your community on MyMSTeam can provide an ongoing emotional boost whenever you feel worried or overwhelmed about life with MS. The community is also here when you want to celebrate a victory.
Many hospitals and medical practices offer resources that extend beyond your neurology appointments. These may include chaplaincy services, health education classes, patient liaisons/advocates or nurse navigators, onsite support groups, and referrals to other services and therapies. Ask your doctor or health care provider about the support and treatment options available to you.
Sharing your MS diagnosis with friends and family can be hard. They may be afraid for you and struggle to react in a helpful way. Try to remember that everyone is doing their best with difficult news. If you’re able, let your loved ones know how they can be most helpful to you during this time, whether that’s sharing the load of household chores or offering a listening ear.
You might not have known much about MS before your diagnosis, but now you probably want to learn more. The resources on MyMSTeam, as well as those from nonprofit organizations like the National Multiple Sclerosis Society, can offer up-to-date information on MS treatments and symptom management. Your health care provider is also a great resource for information.
You may also want to do your own research. Remember to be cautious about what you read online, especially if someone is offering a quick fix or selling a cure. Reach out to your health care provider if you have questions about something you’ve read.
By joining MyMSTeam, the social network and online community for those living with multiple sclerosis, you gain a support group of more than 195,000 people who know what it’s like to manage MS.
If you were just diagnosed with MS, what information are you seeking? For MS veterans, what do you wish you knew when you were first diagnosed? Share in the comments below or directly on MyMSTeam.