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
-
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.
-
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.
-
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.
-
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).
-
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.
Related Questions
My Relationship with Milk Consumption
For nearly two decades, I have predominantly relied on milk as my primary source of hydration, consuming around five liters daily. Although I recognize that this reliance might not be the healthiest choice, my low appetite has perpetually left me underweight. In the past, I attempted to transition to drinking water; however, I noticed a concerning drop in weight along with persistent fatigue. My inquiry is whether there exists a more nutritious method to obtain calories without resorting to solid foods, and ideally, without incurring high costs?
When Can I Expect to Drive Again?
I’m a 35-year-old who suffered a spiral fracture in my right leg affecting both the fibula and tibia. Five weeks post-surgery, I've begun my rehabilitation journey, having undergone physical therapy for three weeks now. I’ve noticed that my leg is beginning to regain sensation, with improved control over my ankle and feeling returning to the sole of my foot. Given this progress, what is a realistic timeframe for when I might be able to drive safely once more?
Seeking Help for Ongoing Health Issues
I am reaching out in desperation for assistance! I'm wondering if anyone else has encountered similar health concerns or could recommend medications or specialists I should consider consulting. I'm truly at a loss and need guidance. As a 23-year-old male vegetarian weighing around 48 kg and standing at 5’4”, I have struggled with being underweight since my childhood. This condition has left me feeling utterly drained and overwhelmed. I’m eager to make a change but feel lost regarding where to begin or which healthcare professional to consult. In my youth, I was diagnosed with asthma, which has significantly improved; however, I continue to deal with low immunity, as I frequently catch colds and coughs from minor exposure to cold environments. Additionally, I’ve noticed that for the past few years, my body temperature feels abnormally high compared to those around me. I experience heat more acutely than my peers. Previously, I was quite active and could walk 4–5 kilometers daily without difficulty. Nowadays, even a short walk of 1–2 kilometers or climbing a few flights of stairs leaves me out of breath and exhausted. Even on days of little physical exertion, I feel weak and lethargic, as though all my vitality has been drained. My appetite has always been low, despite my efforts to increase it. I struggle to consume what would be considered an average meal for someone my age. Just two chapatis or a small bowl of rice or lentils fills me up completely, and attempting to eat more causes discomfort. I often find it perplexing how others manage to eat such larger portions. Dining out has become a challenge for me since even half a plate feels overwhelmingly full. Being extremely slender has made it difficult to find clothing that fits well and has adversely impacted my confidence over the years. For around 15 years, I have hesitated to take photographs of myself. Social and professional circles often regard me as younger than I am, sometimes even as a child, which has contributed to my feelings of invisibility and insecurity. My sensitivity to heat has intensified over the last few years. In seemingly normal room temperatures, I start sweating profusely while those around me remain comfortable. During cold weather, even in temperatures as low as 8°C, I don’t wear warm clothing, as I sweat excessively and feel anxious about overheating. The discomfort can escalate to a point where I feel faint from the heat. In my workplace, where the air conditioning is set at a standard temperature, I find it challenging. I begin to sweat visibly, leaving my clothes damp and prompting coworkers to inquire about my wellbeing. I often feel breathless and anxious that I might collapse if I remain there too long. This makes it very difficult to stay at the office or use public transportation, as even air-conditioned buses can feel uncomfortably warm to me. Over the past year, my situation has deteriorated further. I can no longer tolerate hot or even mildly spiced home-cooked meals, which I used to enjoy without issues. Now, even mildly spiced foods lead to excessive sweating, reddening of my face, and an intense burning sensation in my mouth, akin to consuming overly spicy dishes. As a result, my food intake has diminished even more. I often face ridicule for my dietary limitations, and I’m growing weary of trying to explain my condition, especially when my own family doesn't fully grasp the depth of my struggles, which adds to my distress. I am sharing my story because I truly need help. I wish to identify the underlying issues with my health and seek proper medical attention. If anyone has experienced similar problems or can recommend a suitable type of medical professional to consult, I would greatly appreciate your guidance and support during this challenging time. Thank you. 😭
Interpretation Request for Recent Spinal NM Bone Scan
Hello, doctors. I'm reaching out for your insights regarding a recent NM bone scan of my spine. I've previously undergone a similar scan in 2022, and I'd like to compare the two. To provide context, I am a 29-year-old female weighing 100 kg, and I've been diagnosed with conditions including endplate sclerosis, spinal stenosis, cervical bone spurs, degenerative disc disease (DDD), and mild scoliosis. My medication regimen consists of several prescriptions. Unfortunately, my next appointment with my general practitioner is still a few weeks away, so I would appreciate your assessments on how the latest scan compares to the previous one. Thank you in advance for your help!
Unexpected Eye Issues: Headache and Double Vision Concerns
A 33-year-old female, measuring 1.67 meters in height and weighing 55 kilograms, residing in the Netherlands, experienced a sudden onset of symptoms. Last evening, shortly after dinner, my partner complained of a slight headache localized at the rear of her head. Along with this discomfort, she encountered double vision and noticed her right eye deviating outward. Interestingly, when she shut either eye, the double vision resolved, enabling her to see without distortion. We rushed her to the emergency room later that night. The medical team conducted a variety of assessments, including physical examinations, neurological evaluations, visual tests, and laboratory analyses. Fortunately, all results were normal. However, the doctors found it peculiar that her right eye exhibited normal movement and accurately tracked a pen in all directions when her left eye was closed. The medical opinion suggested that it may be a migraine-related episode, a condition she has experienced previously. Nonetheless, she insists that this feels unlike any migraine she has had in the past. A teleconsultation with a neurologist is scheduled for Monday to arrange an MRI should the symptoms continue. The doctors advised that if her symptoms worsen, we should return to the hospital immediately. Fortunately, after a night's rest, her vision had returned to normal by morning, the headache had subsided, and her right eye was aligned properly. I am understandably concerned, particularly due to her assertion that this does not resemble a typical migraine. Is it possible that this is indeed a migraine, or could it be indicative of another underlying issue? Thank you for your attention to this matter.