14 msfocusmagazine.org Learning Leads to Advocacy Making the transition from newly diagnosed to experienced advocate By Laura Kolaczkowski Hearing the words ‘you have multiple sclerosis’ makes us want to learn all we can, as fast as we can. When I encounter newly diagnosed people, the primary advice I like to share is to think of all the information about MS as a giant smorgasbord of food forthought. Just like those buffets we go to for real food, the selection of information can be tempting yet overwhelming. We want to consumeitall,butit’simpossible to digest everything at once. Instead, we need to take small bits of information and process them before we return for more to build our knowledge of MS. MS is a chronic, lifelong condition and the information we need to live better lives with this disease is going to be there as well. My advice is to take it slow and put on your plate only as much as you can digest before taking more. Bite-sized morsels of information won’t overwhelm you and can be quite satisfying. Trying to understand test results, MRI reports, and all the other medical information we get from our clinicians can drive us crazy. If you have questions, ask your neurologist or MS nurse to explain those results. They went to school for decades studying MS, while most of us who have the disease didn’t do the same. I still struggle to understand the difference between B cells and T cells. Trust the experts to help us make sense of these results: that is part of their job. We also have to trust our own senses. If you feel like some- thing is wrong, even when your test results show no change, speak up to your medical team. Don’t sit by wondering and worrying when you can be asking the experts. This is your life and now MS is also part of it, but MS isn’t all you are. Be sure to keep balance in your life and spend timewithfamilyandfriends,read a good book, indulge in a special food (my favorite is ice cream) or special drink occasionally. Treatyourselfkindly–havingMS isn’t something you did wrong and you aren’t responsible for being ill. Don’t beat yourself up – instead keep living your best life. There is nothing more isolating than being alone with your own thoughts and a chronic disease like MS. As a person with MS, you have power. That power includes sharing your experiences with others in social media forums, running support groups in your own community for MS Focus, or joining patient-directed research groups such as iConquerMS. Find what ways you are comfortable in exerting your own power over MS and do it. Nothing feels better than connecting and letting MS know you are making a difference for yourself and others. It’s important for everyone to know there are so many people on our side in this fight with MS.We beginwith the million peoplewith MS in the U.S. and even more worldwide, and then their support partners and families. Add to them clinicians (doctors, nurses, med Hot Topics MS is a chronic, lifelong condition and the information we need to live better lives with this disease is going to be there as well.