Talking About MS

By: Stacie Prada

Over the years, it’s gotten easier and easier for me to talk about my MS and respond to questions and comments. When I was newly diagnosed and didn’t understand how MS affects my body, I felt a little anxious when people would bring up the subject expecting me to have all the answers. And sometimes I was just too fatigued to have the energy for thoughtful discussion.

I went from knowing nothing about MS to being an expert in how MS affects me. It took a lot of time and effort, and it’s helped me to manage my health better and be able to respond to questions and comments. Now I think of MS conversations as more of an opportunity to connect than a list of pat responses.

Lose the guilt: I think a lot of my anxiety in these early conversations was due to me not wanting to accept that MS will affect my life. I wanted my will to override the physical restrictions MS was placing on me. It took time for me to fully accept that I can’t control or outsmart my body and do everything I used to do or want to do. While I was holding on to the feeling of inadequacy, I couldn’t discuss my MS without feeling a little shame or guilt. And that mindset makes every conversation uncomfortable for all parties. Accepting I can control some things and not others allows me to talk about my MS with confidence. MS is not a character flaw; it’s a medical fact about how my body functions.

Assess the situation: Think about the event and make a goal. Is it to get through the occasion? Is it to have fun and avoid drama? Is it to connect with certain people and have long, meaningful conversations? Each situation will lend itself to a different response.

Determine their motive: Why are they saying what they’re saying? Are they trying to be mean and judgmental? Or are they seeking assurance that you’re okay and they don’t need to worry about you? There’s a difference. A person genuinely trying to help deserves compassionate response. On the other hand, a miserable person that enjoys drama and putting people down is always going to win at their game. They’re too good at it. They’re not reading articles about how to get better at dealing with people they want to make feel bad. If you don’t feel comfortable talking to these people, avoid them if you can. Solicit someone to be with you that can help you cope, by either sticking up for you or diverting the conversation. Lashing out or trying to make the person feel hurt like you feel won’t help in the long run.

Consider the source: Is the challenge how that person interacts with you, or is it the topic that worries you? There’s a big difference. People that are consistently aggressive or love to put you down because they’re “just kidding” can be dealt with differently than people that are trying to be helpful but are pressing your buttons.

I try to remember if I’ve ever had a good interaction with this person and what made it good. It sometimes gives me some ideas for how to deal with future conversations. It’s also helpful to consider how informed this person is. Even if they know a lot about MS, I know they don’t know my body or experience as well as I do.

Know yourself: When we’re at the top of our game, we might be able to roll with an insensitive comment easier than when we’re tired, feeling overwhelmed, and experiencing MS symptoms. We all have certain things that make us uncomfortable. Knowing and accepting my triggers allows me to get through situations better.

Stay true to yourself. Be you. Be the person you like being. The interactions I’ve regretted have been the ones where I felt baited to respond in a way that doesn’t align with my core. Don’t let another person’s comment dictate your mood or change how you feel about yourself. This can be tough when you’re feeling low or frustrated that you even have to deal with MS at all. The guidelines I aspire to may be different than yours, but I’ll include them here as an example:

  • Be genuine and sincere. Coming from a place of anger allows them to diminish your feelings with justification. Coming from a place of curiosity and connection may not always succeed, but at least you can feel good about how you behaved in a stressful situation.
  • Be funny. Be willing to laugh at your situation if you’re able, whether they’ve made the joke or you have.
  • Lead by example. You teach people how to treat you by how you react and how you treat them.
  • If you blow up, make amends when you can, and forgive yourself.
  • Remember it’s a conversation and not a pop quiz or Q&A. The focus doesn’t have to stay on you. You don’t owe anyone a response to a question that makes you uncomfortable.
  • Remember you don’t have to be perfect, and neither does anyone else.

Invite Connection: Some people are worried about saying the wrong thing, and they may need you to give them permission to talk about your MS. When someone like this asks how you are, answer them honestly. And simply tell them that you’re happy to answer any questions they have. It lessens their anxiety and invites conversation. It also reduces the burden on you to figure out what they want to know.

Ask them what their experience with MS is. Have they known people with MS? What’s their knowledge about it? I didn’t know anything about MS when I was diagnosed, and I knew of one person socially that had MS. I’d seen her once with a walker and visibly struggling, and a year later saw her looking fine. Given my extremely limited knowledge of MS before I was diagnosed, I can relate to people that have no concept of MS or other chronic illnesses.

I’m glad when people have an interest in learning more, and I want to encourage them. Being a safe person to ask questions builds compassion and empathy on both our parts. I’ve learned a lot and come to a greater understanding about myself and others through these MS conversations. Even better, I’ve received a lot of support, felt good about myself, and enjoyed a LOT of laughs.

Stay tuned for part 2 to read about tips for responding to questions.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

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