Bittersweet Advocacy

By Stacie Prada

I’m proud to advocate on behalf of multiple sclerosis issues, and I aim to normalize discussing human health experiences without shame. If we live long enough, almost all of us will experience big health issues, and learning from others is a huge help for navigating them.

I’ve participated in Bike MS, Meat Fight, Walk MS, and self-help group leadership. I write openly about my MS experience, I contribute regularly to MSAA’s blog MS Conversations, and I let my community, colleagues, and legislators know that I have MS. I’m happy to answer questions and have spoken to newly diagnosed people and family members quite a few times over the years. If I’m the only person they know with MS and they would like to chat, I’m there for them. They’ll have a unique MS experience, and I want to support them in their journey. I’m eager to encourage kinship, help where I can, and remove any cloak of shame regarding health issues.

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MS Advocacy: The Art of Building Relationships

By Dr. Eva Jackson

The Power of Advocacy

Sherry Lee Mueller once wrote that advocacy is the art of building relationships. In our MS community, advocacy empowers change, strengthens our community, and gives a voice to those who may have been previously voiceless. Those in the MS community consider March their month. The month where we can increase awareness of multiple sclerosis, who it affects, the stigmas linked to the disease, and our search for a cure.

Advocacy takes many forms, ranging from individual efforts to raise awareness to organized campaigns and support groups that strive to influence policy and advance research. At its heart, advocacy is about connecting people with resources, connecting stories to audiences, and connecting needs to solutions. For the MS community, advocacy often means speaking up, not just for oneself, but for others who may not yet have found their voice.

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Using Your Voice

By Angel Blair

It can be a truly powerful thing. Yes, sometimes it’s not easy. It can make you feel uncomfortable, unsure, and anxious. But eventually you find that it is absolutely necessary in order to take care of yourself and to put your needs first. It’s finding your voice and using it when situations call for it. It’s self-advocacy, and it is a crucial part of life. Advocating for yourself is a monumental task and one that elicits various outcomes and feelings. An admirable trait that when executed effectively, can evoke feelings of pride and content. 

For individuals living with MS or another chronic illness, self-advocacy becomes a vital part of the disease journey. From diagnosis to treatment and care, speaking up for your needs, expressing concerns, and asking questions are necessary components to ensure quality care. There may come a time where you have to question a provider, seek another opinion, or say no in response to something regarding your health. These aren’t always easy to accomplish. But you’ll find that because you know yourself and your body best, it’s essential to make others understand what your needs are. 

To do this you have to use your voice, even when others try to shut you down. Sometimes this can feel like a fight, and saying speak up is easier said than done. But if you don’t, you may end up questioning more things than you’d like and wondering how things could have looked differently. The MS disease course can be so unique to those affected that it requires individual accounts, personal perspective, and self-assertion when needed. 

It’s hard not to question or doubt yourself if others protest or show doubt in you. It takes belief and faith and proves to be a job in itself. Having trust in the self-advocacy process is difficult. And though it proves to be a struggle sometimes, it’s worth the fight if it leads to what’s best for you and your care. Ensuring you’re being cared for in the best way possible is the ultimate goal and what you rightfully deserve.

About Angel:

My name is Angel Blair, I am a mom to beautiful twin girls and hold degrees in counseling from schools outside of the Philadelphia area. I’ve worked with the MS community in the past, and am grateful for the opportunities I’ve had in helping others. I enjoy spending time with my family, writing, reading, and traveling.

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It’s National MS Awareness Month!

By Samuel Fitch

The idea of self-advocacy is something that becomes incredibly important when you live with multiple sclerosis or care for someone who does. There are many ways to advocate for yourself, in medical decisions, in treatment conversations, and in daily life. One area that often gets overlooked, however, is how we advocate for our time.

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Connection and Compassion: My MS Journey

By Dr. Eva Jackson

Seeking Answers and Facing Uncertainty

For many years, my health declined, and I found myself searching desperately for answers. I reached out to my healthcare team, at times pleading for their help to uncover what was causing my condition to worsen. Initially, I was diagnosed with dystonia, not multiple sclerosis (MS). As I sought second opinions, it became clear to me that many people struggle to advocate for themselves within the healthcare system. I also realized that healthcare professionals may feel threatened when patients seek external advice or opinions.

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Intention & Expectations

By Stacie Prada

Lately, I’ve been pausing periodically throughout each day to ask myself, “How do I want to show up today?”

It only takes a moment, just enough time for a brief inhale and exhale. It allows me to shake loose whatever thoughts are running through my mind and start fresh. I like to imagine I’m shaking a marked-up Etch-A-Sketch toy to create a clean surface ready for whatever I want to draw.

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Self-Connection

By Angel Blair

When we hear the word relationships we often think about the connections we have to others. Bonds with our family, friends,  significant others, etc. So we tend to forget one of the most important but commonly overlooked relationships we have, and that’s the one we hold with ourselves. We work hard to maintain and foster the relationships that we have with other people in our lives, but the relationship we have with ourselves deserves the same attention and compassion. This is a concept that can get lost in the shuffle of juggling life’s demands, but it has earned the right to be found. 

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The Power of Intentions Over Traditional Goal Setting

By: Dr. Eva Jackson

Rethinking Goal Setting in Our Community

For the past 15 years, members of my community have routinely organized vision board parties toward the end of the year or at the start of the new year, with an emphasis on goal setting. Personally, I have often felt uncomfortable during this period, as traditional goal setting has never resonated with me. I tend to set ambitious goals but frequently find myself unable to achieve them, despite starting with clear intentions. This recurring pattern leads me to believe that perhaps my goals are often unrealistic.

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Vision & Values

By Stacie Prada

I created a vision board years ago that included images of women doing yoga poses I couldn’t do. I attended yoga classes weekly, and I loved how it combined calming breathwork with some of the gymnastics, athleticism, and flexibility that my multiple sclerosis issues had curtailed.

I placed the collage vision board near my makeup vanity, and I didn’t put a lot of effort into tracking it. About a year later, I looked up, and I was startled to realize I could do all the poses on my vision board! Without realizing it, I slowly worked my way toward poses that seemed completely out of reach a year prior. Dancer, feathered peacock, and crane pose had become regular movements in my yoga practice without any periodic notice or celebration. With this realization, my glee absolutely overflowed.

Looking back, I think about how dreaming and acknowledging my aspirations, combined with regularly showing up to yoga class, were the key. They helped me achieve things I hadn’t been convinced I would ever do.

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Making Plans on Your Terms

By Angel Blair

I always considered myself a planner. I constantly made lists; I carefully thought out decisions, big or small, to get to the most optimal outcome. I loved comparing the pros and cons of possibilities for things to come. Though I have to say since having kids, the planner in me has changed a bit. I still try to plan and prepare the best that I can, but I’ve had to come to the very real fact that plans change – no matter how much you prepare otherwise. 

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