Life with MS

Learning Leads to Advocacy

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 for thought. Just like those buffets we go to for real food, the selection of information can be tempting yet overwhelming. We want to consume it all, but it’s impossible 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 something 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 time with family and friends, read a good book, indulge in a special food (my favorite is ice cream) or special drink occasionally. Treat yourself kindly – having MS 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 begin with the million people with MS in the U.S. and even more worldwide, and then their support partners and families. Add to them clinicians (doctors, nurses, med assistants, etc.) and researchers and we have a mighty team. But we also need to remember the amazing work done by advocacy groups – such as MS Focus: The Multiple Sclerosis Foundation – and the resources they put into this fight. We may be the ones going toe-to-toe with MS, but when the going gets tough, we should not forget all these others who have our back.
Yes, I get angry when I read the profit reports from the MS pharmaceutical companies, and knowing what my insurance is charged for my disease-modifying therapies. But that anger is tempered more these days as I better understand the drug development and approval process; how many drugs never make it to the pharmacy yet are studied in trials for years; and what investments pharmaceutical companies put into treating MS, while financially supporting work to find a cure. The more advocacy work I do that involves the business side of MS, the greater appreciation I have for the need to educate everyone about the role of pharmaceutical companies as our allies and not view them exclusively as the enemy.
Never doubt we can all be advocates, we just do this work in different ways and some of us just get more public recognition than others. Advocacy and MS has many ways to play out. Each time we talk about MS to others, we are spreading awareness. Each time we connect with others living with MS, we are offering support. With every email, phone call, or tweet we direct to our elected officials about the need for healthcare for people with MS we are speaking up. All of these are critical advocacy roles and I am proud of all the advocates in my MS community.