Learn How to Use Your Voice for Better MS Care
I was 27 when I learned I had MS, and I didn’t contemplate its impact on the rest of my life. Being young and naive had certain advantages. I never spent time thinking, “Why me? What do I do now?“ It just never occurred to me. I faced my struggles one day at a time.
Impactful changes over the last couple of decades
I needed the internet and a cell phone to seek help, but they weren’t around. This was in 1986 - a much different time to be diagnosed. Today, patients can create supportive communities and find research and informed opinions in seconds, with the help of a keyboard.
I’ve said this before, and I’ll repeat it now. If you were diagnosed over the last 20-something years, you’re ironically diagnosed at a “better” time. Since 1993, over 20 MS drugs have been FDA-approved, with more being studied. Complementary medicine is no longer frowned upon like it used to be by the medical community. Doctors and patients now openly discuss yoga, meditation, t’ai chi, and other holistic therapies. Patients are sharing their stories for the benefit of others - we learn from one another. Today, the MS community is a close-knit family.1
Today's advocacy for MS care
As I look around the internet, from social media to articles in national and international magazines, I realize how savvy and outspoken today’s patients are about their health. Nothing is taken for granted because they push for answers. No subject is taboo; no voice needs to be silenced. It’s our right to be treated with dignity and respect, and patients will speak up to get it. I’m in awe of this younger generation and applaud them for their determination to accept nothing less than what they deserve.
Fighting for what’s right isn’t always easy. Ask anyone whose insurance company denies coverage for a much-needed medication. Or, a patient who’s received a subpar examination from their doctor. Or, someone facing ridicule or intolerance from others because they don’t understand invisible illness.
Learning to speak up for myself
I know it’s not easy to advocate for yourself. It can be hard to stand up and use your voice for your needs. As an introvert, speaking up about what I needed was extremely difficult. I’d sit in my discomfort, knowing I was unhappy, but had no courage to say something about it. That’s why I needed an advocate to speak up on my behalf. Back then, I had my parents to advocate for me and, after that, my husband. They loved me and had my best interests at heart. In time, I learned that speaking up for myself would be more effective (and better for my self-esteem). I cultivated the courage to use my voice and never looked back.
Tips for advocating for yourself
If you’re having a difficult time speaking up, I hear you. Consider these simple rules to get you started:
- Read, read, read. Anything you can get your hands on about MS. Education is empowerment.
- Speak to others in the MS community. There’s power in shared stories. Find inspiration in their words and experiences. Lean on their kindness and compassion.
- Stay as healthy as possible within your abilities. Exercise, healthy eating, and lowering stress and anxiety can strengthen your body and mind. Treating yourself with tender, loving care is the greatest gift you can give yourself. Your mind and heart are more robust when you feel your best (within your abilities). Then, you’ll be better positioned to use your strong patient voice.
Remember, you matter and are deserving of a sweet life. MS should never take that away from you. Ever.
Were you misdiagnosed with something else before receiving a MS diagnosis?