OpenHealth Q&A

Enhancing Communication with My Doctor About My Symptoms

Age 26, residing in Australia. I am dealing with moderate systemic lupus erythematosus and major depressive disorder. With an immunology appointment quickly approaching, I’ve realized that I may not have fully conveyed the extent to which my symptoms affect my life during previous consultations. My mother is incredibly supportive and often accompanies me to these appointments for emotional backing. However, she was unable to be present for my diagnosis at 18, as I lived interstate. Since I moved back home, I have been cautious not to make her feel distressed about my condition, which has led me to downplay the severity of my symptoms. I recently had a conversation with my mother, and I’ve decided to attend this week’s meeting solo, hoping it will allow me to be more transparent about my experience. I became aware of this issue in a recent session with a neuropsychologist from my immunology outpatient clinic. We discussed the gradual worsening of my symptoms—including cognitive difficulties, which necessitated the referral—along with the toll it has taken on my quality of life over the past year. I admitted that I struggle to express the full extent of my challenges to my family, which initially raised his concern that my immunologist might not be paying attention to my issues. Yet, I have consistently received excellent care from my doctors since my diagnosis. I understand that the options currently available in medical practice can be somewhat limited for my specific conditions, so I strive to maintain a realistic outlook on the existing treatments. The specialist I consult is well-versed in current research, provides evidence-based recommendations, and acknowledges the various symptoms I present. However, I often find myself merely stating, "I've been experiencing symptom x for some time" without elaborating on how drastically they impact my daily life— from managing personal hygiene and maintaining proper nutrition to managing work and academic responsibilities and nurturing my relationships. In our upcoming appointment, we will explore potential additional and stronger treatments. Presently, I am on the maximum dose of hydroxychloroquine, the maximum dose of mycophenolate mofetil, and celecoxib for pleurisy and costochondritis associated with lupus, alongside intermittent use of prednisolone. Unfortunately, I am currently facing an array of side effects from that medication. In our last discussion, my doctor mentioned biologics and methotrexate as potential next steps. Since my lab results mostly indicate inflammation and low neutrophils without much clarity, I want to ensure I communicate my situation as accurately as possible to my specialist. Are there specific aspects of my experience that could help guide you in prescribing the most effective treatment in such circumstances?

Answers (1)

6/30/2025, 3:40:47 PM

OpenHealth AI

To effectively communicate with your doctor about your symptoms and ensure the best possible care during your upcoming appointment, focus on expressing the full impact of your experiences and challenges. This will help your specialist understand your situation more clearly.

Explanation

It's common for patients to downplay symptoms or not express the depth of their impact, especially when aiming to protect loved ones from distress. However, sharing your daily struggles, including how symptoms interfere with personal care, relationships, and work, can provide your doctor crucial context for treatment decisions. Since you're already aware of this, it’s an excellent step toward advocating for your health.

Next Steps

1. Prepare an Impact Statement: Before your appointment, write down specific examples of how lupus and your current treatment affect your daily life. Consider structuring it in a way that includes:

   • Daily Activities: Describe how symptoms like pain, fatigue, or cognitive issues influence your ability to manage personal care or maintain nutrition.
   • Social Interactions: Consider how symptoms impact your relationships or ability to engage socially.
   • Work/Academic Responsibilities: Detail any difficulties you face in concentrating, completing tasks, or attending work/school.

2. List Your Symptoms and Concerns: Create a concise list of your symptoms, particularly those that have worsened or changed recently. Note any side effects from medications, as these will help your doctor understand your overall condition.

3. Set Goals for Your Appointment: Think about what you want to achieve in the meeting. This could include specific outcomes like adjustments to your current medications or exploring new treatment options like biologics and methotrexate. Write these down to refer to during your discussion.

4. Practice Saying It Out Loud: If you feel nervous about speaking alone, practice expressing your concerns out loud. This could be in front of a mirror or with a trusted friend or family member (if they can provide emotional support, consider including them after your main discussion if you’re comfortable).

5. Ask Questions: Prepare questions for your specialist about the proposed treatments, potential side effects, and strategies for managing symptom flares. This will show that you’re actively engaged in your treatment plan.

Reassurance

Remember, it’s perfectly okay to be honest about your experiences and to seek help. Your doctor is there to support you, and providing a clear picture of your condition is an essential part of that process. Speak openly, and trust that your concerns will be taken seriously. You deserve comprehensive care that reflects the reality of your experience.