Navigating healthcare can feel like an uphill battle for everyone, but when you’re living with a disability, those challenges are often magnified. For me, living with Muscular Dystrophy means that even the simplest medical appointments can become complex. From dealing with doctors who don’t understand my condition to having to advocate for the care I deserve, healthcare isn’t just about seeking treatment; it’s about fighting for the dignity and respect I deserve as a disabled woman.
And I know I’m not alone in this.
If you’re reading this and you’re disabled, you’ve probably had your fair share of frustrating experiences with doctors, nurses, and hospitals who didn’t understand your needs or weren’t prepared to meet them. But here’s the thing: you are your own best advocate. I’ve learned this the hard way, and I want to share what I’ve learned with you. It’s not always easy, but with the right tools and mindset, we can create the healthcare experience we deserve.
The Unique Challenges Disabled People Face in Healthcare
I remember a time when I went to see a new doctor. It was supposed to be a routine appointment, but it turned into something else entirely. I had to explain over and over what Muscular Dystrophy is, what it means for my daily life, and how I manage it. I could see the confusion in their eyes, and I knew they weren’t listening to understand, they were just trying to move through their checklist of questions. I was just another patient on the roster.
And that’s the thing. Many healthcare professionals simply aren’t educated about the specific needs of disabled individuals, especially those with non-visible disabilities. From miscommunication to outright ignorance, it can feel like you’re always in a battle to get the care you need.
For people like me who rely on others for help with basic tasks, getting the proper care often means teaching the people around you, whether that’s a medical professional or a new caregiver, about your body, your needs, and what you expect from them. This can be exhausting, but it’s something we can’t ignore.
How to Advocate for Yourself in Healthcare Settings
As someone who has spent years learning to advocate for my own care, here are some of the most effective tips I’ve gathered along the way. These strategies have helped me, and I believe they’ll help you too:
- Know Your Condition Inside and Out
It sounds simple, but it’s powerful. Knowing the ins and outs of your disability, including treatments, potential complications, and limitations, gives you the power to educate those around you. I can’t count the number of times I’ve had to correct a doctor or nurse who didn’t understand the nuances of my condition. You should never feel embarrassed or shy to speak up when a doctor doesn’t get it.
Before appointments, I recommend doing a little homework on your disability, reading up on the latest studies or any new treatments available. Having this knowledge at hand will not only boost your confidence but will also show your healthcare providers that you’re informed, proactive, and serious about your care.
- Be Clear and Direct
In medical settings, it’s easy to feel intimidated, especially when the people in white coats have a lot of authority. But don’t let that silence you. The more clear and direct you can be about what you need, the better. For example, if you need extra time for an appointment due to your mobility limitations, ask for it upfront. If you require specific accommodations (e.g., accessible exam tables, space for your wheelchair), don’t hesitate to mention it. I’ve had to speak up more times than I can count, and every time I do, I feel more empowered.
- Bring a Support Person if You Can
Sometimes, advocating for yourself is easier when you have someone with you. Whether it’s a caregiver, family member, or friend, a support person can help keep track of medical information and provide additional support when you need it. They can also be there to back you up when you feel like your concerns aren’t being taken seriously.
- Understand Your Rights
If there’s one thing that has been absolutely crucial to my healthcare journey, it’s knowing my rights. In many cases, patients with disabilities are protected under laws like the Americans with Disabilities Act (ADA), which mandates equal access to services, reasonable accommodations, and non-discriminatory treatment in healthcare settings. Know these laws and don’t be afraid to use them to your advantage.
- Take Notes During Appointments
I keep a notebook with me for every doctor’s appointment. This might sound like a small detail, but it helps so much. Write down anything important that’s said, any instructions you’re given, and any follow-up actions you need to take. If you ever need to revisit something, you’ll have a record of the conversation. Plus, taking notes shows the doctor that you’re serious about managing your health and well-being.
- Speak Up About Mental Health
Healthcare isn’t just about physical care; it’s about your whole well-being. As a disabled woman, I’ve had moments where my mental health was just as important as my physical health. Don’t be afraid to speak up about how your disability impacts your mental health. Let your healthcare providers know if you’re struggling emotionally or mentally. Mental health is often overlooked in disability care, but it is just as critical as physical health.
- Ask for What You Need, Not What You Think They’ll Give You
This one is tough, especially when we’re used to compromising or accepting less than we deserve. When dealing with doctors or hospitals, don’t shy away from asking for exactly what you need, not just what you think they’ll give you. For example, if you need specific assistive technology or a particular treatment plan, ask for it. The worst thing that can happen is they say no, but at least you’ve tried.
The Bigger Picture: Why We Need More Awareness in Healthcare
It’s not just about individuals navigating the system, it’s about systemic change. We need healthcare professionals who are trained to recognize the needs of disabled individuals. We need more accessibility, better accommodations, and more compassion in medical settings. The goal is to move from a system where we’re constantly educating healthcare workers about our needs, to a system that already understands and provides appropriate care without us having to fight for it.
That’s why it’s so important for us to advocate, not just for ourselves, but for the entire disability community. When we advocate for our care, we’re also advocating for those who don’t have a voice yet or those who are too tired to keep fighting.
Final Thoughts: You Deserve Better Healthcare
At the end of the day, we all deserve healthcare that respects us, understands our needs, and provides the best possible care. Navigating the medical system as a disabled person is tough, but by advocating for ourselves, we can demand better and work toward a system that truly works for all of us.
If you’re struggling with advocacy or don’t know where to start, you’re not alone. Reach out, share your story, and don’t be afraid to ask for what you deserve. Whether you’re looking for resources, advice, or just a community of people who understand, I’m here for you. Together, we can make the healthcare system work for all of us.
Want to share your own experiences or need more guidance on advocating for your care? Connect with me at Girls Chronically Rock. We’re here to help you on your journey.