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Living with a spinal cord injury can sometimes feel overwhelming and isolating, like a chapter in your story has been taken away. Whether you’re newly adjusting to life after an SCI or many years into the journey, finding the courage to speak up about your experiences isn’t always easy. Silence can give space to self-pity, depression, and anxiety. But it doesn’t have to stay that way.
At HerSpine Solutions, we believe your voice is healing and powerful. You deserve to reclaim your story, speak your truth, and step into the power that creates change, not just for yourself, but for other women who need the reminder that they are not alone.
As we mark SCI Awareness Month, let’s explore why reclaiming your voice matters and how you can begin with steady, empowering steps.
Yes, you’re living with SCI, but your injury doesn’t define you; it’s part of your story. When you speak up, whether to a friend or a community, it gives you healing power. You move from being someone things happen to, to someone who shapes what happens next.
Your story matters for you. Speaking up helps you process your experiences, release emotions you may have held inside, and rebuild your sense of identity. Every time you put words to your journey, you reclaim confidence, dignity, and ownership of your life. It’s not just about being heard by others; it’s about hearing yourself and recognising your own strength.
Your story also matters for others. Sharing your story can help you rise from feelings of hopelessness and depression to becoming an advocate for others. Whether it’s the woman in a hospital bed, wondering if her life is over, or the woman scrolling through endless medical articles, desperate for an SCI story that feels like hope; your voice could be the lifeline she’s searching for.
Every time you share your truth, you push back against the stereotypes about women with spinal cord injury. You show the world that you are capable and deserving of respect. Your story becomes proof that life after SCI isn’t something to simply endure; it’s something that can be actively, joyfully lived.
Sharing your story can make you vulnerable, but here’s what we’ve learned from the incredible women in our community: silence doesn’t protect you from pain, but speaking up can transform it into purpose. Let your journey become a roadmap for others navigating their own path.
If you don’t speak up for yourself, no one will. And it’s the same for those with SCI. Recognize that you’re the expert on your own experience, and that means you know your body, your needs, and your worth better than anyone else.
Self-advocacy after SCI is necessary for your physical health, emotional wellbeing, and quality of life. You can speak up for change and influence better care so that you, and others, can thrive. Here are some examples of how you can show up:
1. Advocating for Accessible Healthcare
Living with a spinal cord injury can sometimes mean dealing with healthcare providers who dismiss your concerns, rush through appointments, or make assumptions about your abilities. This treatment, even if unintentional, can leave many women feeling silenced and unsupported. But this isn’t okay, and you don’t have to accept it.
Hospitals and healthcare systems should be leading the way in training professionals to provide respectful, inclusive care. But the reality is, many women find that unless they advocate for themselves, they don’t always get the care or disability benefits they deserve.
That’s why speaking up for yourself is so important, not because the burden should fall on you, but because it can be the difference between being overlooked and being heard.
Before your next appointment:
a. Write down your questions and concerns.
b. Your time matters, and you deserve clear answers.
c. Bring a trusted person with you if it helps you feel more confident.
During your appointment:
a. Don’t allow anyone to speak over you or make decisions without your input.
b. Ask for clarification whenever medical jargon feels overwhelming.
c. Work towards building consistent, respectful communication with your providers.
Remember: you’re not being “difficult” when you advocate for your health. You’re being brave, and you’re protecting your right to proper care.
💡For more practical steps, check out our blog on How to Advocate for Your Health as a Woman Living with Spinal Cord Injury in the Hospital.
2. Communicating Needs in Relationships
Living with SCI can shift family dynamics, friendships, and romantic relationships in unexpected ways. It’s natural to feel frustrated when others don’t seem to understand you. But often, the people we love want to help so much that they forget we’re still whole people with our own desires and independence.
First of all, it’s okay to feel tired of being treated as fragile or incapable. But don’t let that frustration turn into pity, resentment, or pride. Instead, set boundaries around the kind of support you want while protecting your independence.
a. Be clear about your needs, whether physical, emotional, or financial.
b. When you’re ready, move beyond self-pity and invite your loved ones to do the same. Often, they reflect the mental state you show them.
The people who love you genuinely want to know how to love you well. So give them the roadmap: speak up about your desires, your boundaries, and your independence.
3. Workplace Conversations:
Returning to work or starting a new job after experiencing SCI can feel overwhelming, especially if you’re self-conscious. You may wonder: Will my colleagues treat me differently? Can I keep up? Will they see my abilities, or only my wheelchair?
The truth is, people might act awkward at first, sometimes with pity, sometimes with uncertainty. Most of the time, they simply need guidance on how to interact respectfully, and that’s where you come in.
a. Have open conversations with your colleagues, especially when new adjustments are needed.
b. Ask for help when necessary, and continue doing the activities you can with confidence.
c. Calmly but firmly address any negative or dismissive comments. Remember: your voice deserves to be heard.
d. Most importantly, speak up about your skills, experience, and the value you bring to the team. Your presence is not charity; it’s contribution, and it matters.
💡If finding a job after spinal cord injury feels daunting, check out this article for tips on job hunting with a calmer approach.
Sharing your story is powerful advocacy, but it’s also more than that, it’s a pathway to personal healing and connection. Your words don’t just push for change in society, they also help you process your journey and remind others they are not alone.
You may be speaking to women who are just beginning life with SCI, to people curious and wanting to learn, or to communities trying to build safer, more inclusive spaces. Whatever the audience, your story has value. Don’t shy away from what lies ahead, embrace it, and show others what’s possible. In telling your story, you heal, grow, and give hope.
Here are some ways you can share your story:
1. Journaling
Sometimes, the first person you need to share your story with is yourself. Write in a notebook, record your voice, or even type notes into your phone. Reflect on the day everything changed, and the moment you felt hope again. Write about the small victories, and setbacks no one else notices. Don’t be afraid to write the good, bad and the ugly. All of that has shaped you into the resilient woman you are today.
2. Talk to Friends
After a life-changing experience, it can be hard to trust people again but it’s also not the time to self-isolate. Share your story with the people closest to you, especially those who can listen to your experience without trying to fix it. You owe yourself that healing experience that comes from talking about your story.
3. Join Support Groups:
There’s something powerful about being in a room with other women who understand what it’s like to navigate bathrooms, relationships, and career goals with a spinal cord injury.
That’s what we do at the HerSpine Virtual Ladies Lounge, an online space where women gather twice a month to share experiences and provide spinal injury support. Join our next meeting here and discover what it feels like to be completely understood.
4. Embrace Digital Platforms
You can use digital platforms to educate people about spinal cord injuries, and connect with women just like you. Consider sharing through:
a. Blog posts about different aspects of your SCI journey
b. Social media content that show the struggles and joys of your daily life
c. Video posts where you can speak directly to other women who need encouragement
d. Podcast interviews where you can go deeper into your story
The world certainly deserves more authentic voices from women with spinal cord injury.
5. Use Creative Expressions
Not everyone communicates effectively through words, and that’s okay. You can still tell your story through:
a. Photos or videos that captures moments of strength or vulnerability
b. Art or crafts that express feelings words can’t capture
c. Music or poetry that goes deep into your experience
Creativity has its own healing power. Let your story emerge in whatever form feels right to you.
6. Setting Boundaries while Sharing:
As you begin sharing your story, it’s important to protect your energy and privacy. You can decide:
a. How much to share and what to keep private
b. Whether to engage with negative comments or simply block
c. Which platforms feel safe
d. When you need a break to focus on your own healing
Sharing your story is powerful, but taking care of yourself always comes first.
Reclaiming your voice after spinal cord injury doesn’t happen overnight. It takes patience and practice, but each day is an opportunity to move from silence to strength, and from isolation to influence. By sharing your story, you not only create change for yourself but also open doors of understanding for others. And remember, we’re here, cheering you on every step of the way.
💡Ready to learn more about living with SCI? Subscribe to our LinkedIn newsletter and read the stories about how women with spinal cord injury are redefining what’s possible.
Remember: Your story matters. Your voice matters. You matter.
1. What is spinal cord injury advocacy?
SCI advocacy is about using your voice and experience to create positive change for yourself and others living with SCI. Think of it as speaking up for what you need and deserve. It can involve educating healthcare providers about respectful, quality care, sharing your real experience to help other women feel less alone, or supporting policy changes that improve accessibility and rights.
2. How do I handle negative responses?
Negative responses can hurt, especially when you’re being vulnerable about your experience. Unfortunately, not everyone will understand your journey, and that’s okay. Instead of feeling hurt, protect your energy by setting clear boundaries. Block or mute people who leave cruel comments, and lean on your support network when responses feel overwhelming. The people who need to hear your voice, will receive your story with the respect and gratitude it deserves.
3. What if I don’t feel ready to share my story yet?
If you’re not ready to share your story yet, that’s completely okay. Only you can decide when and if you’re ready to share your experience with others. Start where you feel safe, like journaling or talking to a family member. Taking care of your own healing first isn’t selfish, it’s necessary.
4. What if my family doesn’t understand my need for independence?
Adjusting to change can be hard, even for family members. Most times, they become overprotective but always remember that this comes from a place of love and fear. Have gentle but clear conversations about your capabilities and needs. Set small boundaries over time and consider joining counseling groups that include family members.