How to Be Your Own Advocate While Navigating Chronic Illness
Having to navigate a complex medical system while being chronically ill can be cumbersome, exhausting, and depleting. Finding providers whom we trust and feel safe with can feel like an impossibly daunting task. Sabrina Sarro LCSW, joins us again to discuss techniques and tools regarding patient advocacy will be discussed to allow patients a greater sense of autonomy and agency when collaborating with different medical professionals.
Experimenting With Different Providers
The medical industrial complex, as many of us know, is a system embedded in racism, sizeism, and ableism. For many of us who experience chronic pain, finding a provider whom we feel comfortable with and safe with can be a laborious and enduring process. Providers who specialize in Interstitial Cystitis/Painful Bladder Syndrome can be especially difficult to come by as most general practitioners in the OB/GYN and Urology space sometimes don’t even understand the gravitas of what we experience daily and how to effectively target symptoms. As a provider, I recommend trying out different providers until you find one that feels the most resonant. Don’t be afraid to bring loved ones to your appointments so they can be further integrated with your care. Prepare questions you want to ask your provider ahead of your visit. If your provider says something that feels dismissive or invalidating to your particular experience of pain, don’t be afraid to say something and respectfully describe how their commentary is negatively affecting your trust and medical relationship. Take notes, ask to record, and though no experience is guaranteed to be perfect, remember that if you feel disrespected or disregarded by a medical provider, you are always entitled to say something and seek care elsewhere.
Here are examples of respectful scripts that you can use to express how a doctor's dismissive or invalidating comments are affecting your trust and medical relationship:
Patient: “Doctor, I need to share something important with you. I understand that you have a lot of experience and expertise, and I respect that. However, when you made the comment about [specific comment], it made me feel [describe the feeling, e.g., dismissed, invalidated, unheard].”
Patient: “I want to emphasize that my experience of pain is very real and affects my daily life significantly. When I feel dismissed, it makes it harder for me to trust that my concerns are being taken seriously and that we are working together towards a solution.”
Patient: “It’s important for me to feel heard and understood in our conversations. I believe that a strong patient-doctor relationship is built on mutual respect and trust. Can we discuss my symptoms and concerns in a way that helps both of us understand what I’m going through and how we can best address it?”
Patient: “I appreciate your time and expertise, and I am hopeful that we can find a way to communicate that ensures I feel supported and validated in this process.”
Tips for Using these Scripts:
Stay Calm and Respectful: Keep your tone calm and respectful, even if you feel frustrated.
Be Specific: Mention the specific comment that was dismissive or invalidating.
Describe Your Feelings: Share how the comment made you feel and the impact on your trust.
Request Collaborative Communication: Emphasize the importance of a respectful and collaborative approach to your care.
Express Appreciation: Acknowledge the doctor’s expertise and express hope for a positive working relationship.
This approach helps to assert your feelings and concerns without being confrontational, encouraging a constructive dialogue with your doctor.
Though the above three suggestions just briefly speak to the myriad of ways to still find purpose and meaning in a life greatly affected by physical pain, remember that an empathetic community exists, provers who deeply want to make a difference are there, and you are worthy and deserving of a delicious, dimensional time on this planet while you also navigate your chronic pain.