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Living with a chronic illness is a multifaceted challenge that extends beyond managing symptoms and treatment. It often involves building up enough resilience to handle the stress of navigating the health insurance system.

From understanding the intricate details of coverage to dealing with roadblocks like prior authorizations and denials, managing health insurance can be a full-time job.

In a recent #CreakyChats discussion, we explored various facets of health insurance with our members. Topics ranged from the emotional toll of insurance-related stress to strategies for overcoming insurance hurdles like prior authorization and denials. We also discussed how to talk about insurance with health care providers and how to raise awareness about these challenges to improve health care access.

The insights gleaned from our #CreakyChats discussion underscore the vital roles that a supportive network, proactive communication, and self-advocacy play in managing health challenges. We hope these shared experiences and strategies not only inspire you but also help you feel less isolated in your journey.

The Fight for Medication Access

Access to medication is a critical issue that many people don’t anticipate until they’re diagnosed with a chronic illness. And often, the struggle doesn’t end with a diagnosis; it continues as they try to get the treatment they need.

“I never knew access to medications would be an issue until I was 35 years old and diagnosed with my first chronic illness. It only got worse from there! The insurance companies continued to fight against 75 percent of the meds my providers felt would benefit me the most.” — JP S.

“The what if really gets you. What if I don’t get my medication on time? What if they decide I need something else? What if my doctor doesn’t respond? It can be stressful because so much is out of your control.” — Eddie A.

“It drains so much of my mental energy. I feel frustrated, angry, and often, left in tears. The unnecessary stress exhausts me to the point I withdraw from being around my loved ones and want to be left alone. I just don’t want anyone to see me in this state of mind.” — JP S.

Building Your Support Network

Support is essential when navigating the confusing world of chronic illness and health care. The emotional and informational support from a community can make all the difference.

“Get people in your corner. Doctors, friends, family, internet friends. Whoever you have to help you — you don’t have to be the only one fighting and there are people out there who can help.” — @maddieles

Working With Your Doctors

The best way to avoid frustrations and roadblocks is to be proactive. Know what steps you need to take and how long they might take so that you’re not left in the lurch.

“My rheumatologist or other doctors usually bring it up and try to help with getting the prior authorization going and if not, I bring it up and ask about a timeframe and what I need to do. I leave the appointment with a plan.” — Shelley F.

“I have learned that asking the right questions is THE most important thing. Each person in the cog thinks you know what they do. I also have to start with the simplest solution to the problem and work outward to the most complicated. That saves a lot of time.” — @UnexpctdAdvocate

Hurry Up and Wait: Patience Is Key

Navigating the health care system often feels like a lesson in patience, as waiting — whether on the phone for insurance authorization or for a doctor’s reply — becomes an inevitable part of the journey.

“I try to take notes of everything I’m told. A couple of years ago I had to stay on the phone about three hours being on hold and transferred. I was not hanging up without an answer. You have to be prepared to hurry up and wait.” — Eddie A.

“Adjusting my expectation to just planning to be on hold for hours has helped lower the frustration some.” — Elisa C.

Be Your Own Advocate

Managing chronic illness involves more than merely adhering to medical advice; it also calls for active self-advocacy in your health care journey.

“We have to be our own advocate. Besides, every doctor’s office has different processes. It’s better to be informed.” — Jae W.

“We are our own best health advocates. We have to be, no one else is going to fight for us. It’s just so exhausting, enraging. That time, effort, and energy never gets made up though… The fight and the diseases all get intermingled, it can be overwhelming.” — @jessupatlarge

“Use your voice in as many ways as possible. Social media. Speaking to people at insurance and pharmacy. But politicians need to be made aware. This won’t change unless companies are forced to. It shouldn’t be this difficult.” — Eddie A.

Join Our Monthly #CreakyChats

Our monthly, patient-driven Twitter discussion, #CreakyChats, explores topics that are important to the chronic disease community. During a one-hour moderated chat, we provide a space for people to discuss pressing issues facing the arthritis/chronic disease community. You don’t need to be a Twitter pro to join.  

During #CreakyChats we encourage everyone to share their strengths, challenges, and experiences — that is how we can help and support people as they navigate life with chronic disease.  

During #CreakyChats we encourage everyone to share their strengths, challenges, and experiences — that is how we can help and support people as they navigate life with chronic disease. 

Want to Get More Involved with Patient Advocacy? 

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspectives and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.  

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