tips for navigating the healthcare system when living with chronic pain

If you are someone who lives with chronic pain, you know how challenging it can be to find a healthcare practitioner who understands your condition, exhausting to manage care from multiple providers and dealing with insurance, and expensive to get the medications you need and the specialists who can help. It's no surprise that 79% of chronic pain patients feel unsatisfied with their care. This post presents 4 tips for navigating the US healthcare system as a person living with chronic pain. I know that everyone is different, and everyone faces their own challenges, so view these tips as a starting point for your own situation.

Photo by Ivan Samkov from Pexels

Disclaimer: Living with chronic pain is exhausting. I speak from firsthand experience. Learning about your condition, managing doctor appointments and medications, and advocating for yourself is exhausting too, even if you weren't living with chronic pain. Know that in this post when I make a suggestion for "you" to do something, I am referring to you and your support system. I am also not saying that you need to do all of these things (or any of them!).  My hope is that this post sparks some ideas in your mind about your own next steps.

learn more about your condition

If you have a rare and/or complicated condition, it can be difficult to understand what's going on in your own body. Add to that how many of us are living with multiple conditions with overlapping symptoms and multiple medications and the situation gets more complicated. 

It's important to find a care provider who understands your condition, but that in itself can be challenging and you may feel like you have to interview multiple health care practitioners before you find a good fit. Call their office and ask to speak with their nurse rather than scheduling online. Ask if you can have a virtual or phone call before coming into the office. Try to research online to see if they list your condition as a specialty or ask your other care providers who are already a good fit if they can refer you. For example, if you already see a therapist who specializes in treating chronic pain, find out if they know of a physician or NP in the area who is known for quality patient care for patients like you.

advocate for yourself

If you're not sure where to start in researching your condition, look to professional organization websites as a starting point. Think about whether local support group would be helpful to you. Start a notebook or computer document where you can copy and paste the information you find and bring it to your care appointments.

Many websites have patient advocacy documents, such as questions to ask your doctor, so that you can engage in your care more effectively. For example, if your provider is recommending a certain treatment plan for you, ask about other options and the pros and cons. Talk about what would be a better fit for you. 

​Ask your doctor about the likelihood that insurance will require pre-authorization and ask them to appeal on your behalf if the request is rejected. Call your insurance company to find out about your plan and what alternatives there are to get you the treatments you need.

If you haven't already, consider creating a medical binder that contains your current list of medications and other information you may be asked at appointments. 

know your rights

The Americans with Disabilities Act prevents discrimination against people with disabilities. Learn about your rights and how they apply to your workplace and healthcare. If you're starting a new job, or were recently diagnosed with chronic pain, schedule a meeting with your company's HR department to find out what changes can be made. These changes may apply to your schedule, your sick days, as well as physical accomodations.

seek second opinions

I mentioned interviewing healthcare providers earlier in the post. If you are satisfied with your primary care provider for most things but feel like you need a second opinion for specific aspects of your care, ask them who they would recommend for a second opinion. 

Healthcare professionals are just that - professional. They shouldn't take your request for a second opinion personally, and you shouldn't feel bad for asking for one - it's your health and your care! Different doctors have different levels of experience with different conditions and treatments.

However, if you feel like you are possibly a victim of medical malpractice, don't hesitate to seek out a medical malpractice attorney for hire to learn about your options.