I have always felt very comfortable in relation to multiple sclerosis. I have no problem talking about MS, especially at home, where I feel completely accepted and understood. And in addition to having lived with MS for over four years, my work is about MS – I am the founder of a virtual network that provides information for thousands of Brazilians with MS - the association Amigos Múltiplos pela Esclerose [Multiple Friends for Sclerosis].
When I give advice to others with MS, I often say that when you are diagnosed, it is like your whole family is diagnosed. Your MS impacts more than just you. And what I realized after several years of living with MS was that I was having a hard time sharing my feelings about my MS with those closest to me, with those at home.
The irony of this struck me the day my friend Bruna Rocha visited us at home. During a family lunch, my parents and sisters were asking Bruna so many questions about MS that her food went cold and she barely had time to eat. All this time, as I had dedicated my time to work with other families living with MS, I had forgotten to share my sufferings, hopes, anxieties and expectations with my own.
So I decided to change that. How could I make my own family feel supported and active about how to deal with MS and the challenges it brings?
So when my family gathered on a sunny Sunday, loudly talking around a table, I waited for the right moment to tell them about my last doctor’s appointment, something totally new for me. When should I share? During the main course or dessert? I resolved to tackle the tough stuff when my mother brought out the coffee. And I did. I began to speak, feeling rehearsed, as if I had studied for that moment, and soon there was silence. I could feel their attention on me, and following the silence came many questions. Those moments when I started to be honest and share were some of the longest of my life, but they were worth it.
We left the table and all that suspense has given way to a sense of unity and family!
From this “social experiment” which I prefer to call “my family revolution,” I have learned new ways of handling my MS at home. And I would like to share them with you:
1. Accept your MS. I know it’s not easy to accept your diagnosis with a disease like MS. But to talk about it with others, you need to have discussed it with yourself. From the moment you accept it as something that does not defines you, it becomes easier to face its challenges, find ways to live along with it and convince others to do the same.
2. Organize your thoughts. Calm down, take a deep breath and write down everything you’d like to talk about with your family. Putting it down on paper can help you to organize your thoughts and feelings. And when you embark on that conversation, do not forget to always leave a space for others to speak, ask questions and participate in the conversation.
3. Maximize your comfort. When you’re ready to talk about your MS, choose a time and location that you feel comfortable with, or set a particular time to sit down as a family. Whether planned or unplanned, the power of these conversations comes when everyone is together.
4. Forget right and wrong. Every human being is unique! This applies to the way we express feelings and reactions, so be open to opinions, advice or other demonstrations of care and concern from your friends and family. Although sometimes their efforts may not be exactly what you had imagined, try to accept the way they are offering you support. And remember: only you can change the way others think about MS, which is why it’s so important to talk about it.
5. Don’t forget to live! Giving up your dreams is never an option, and your family is there to support you. Goals can be adapted and reworked with a support system like that. Don’t stop singing songs you love, watching good movies, discovering new things. Your family is there for you, and an honest flow of conversation about MS can only strengthen those bonds.
Interested in seeing the Portuguese version of Living Like You (Vivendo como você)? Visit:http://esclerosemultipla.novartis.com.br/vivendo-como-voce/ for more great content.