How an Ehlers-Danlos Diagnosis Could Shape Your Care Plan
Receiving an Ehlers-Danlos (EDS) diagnosis can significantly alter one's care plan. While every individual's experience is unique, I will share how it changed mine, providing insights that could be beneficial to others in similar situations.
Before the Diagnosis
Before my diagnosis, I was constantly seeking answers and underwent numerous diagnostic tests, frequently visiting doctors. I tried various physical therapies and rigorous exercise routines, often pushing myself to extremes. This approach, while well-intentioned, did more harm than good. My body was already under immense stress, and the lack of knowledge about EDS made my treatment ineffective and sometimes harmful.
After the Diagnosis
After discovering I had EDS, my approach to my care plan took a dramatic shift. Instead of continually seeking answers through further tests, I began to educate myself extensively about my condition. When new symptoms arose, I would research and learn more, but I became much more cautious about diving headfirst into various treatments.
One of the most significant changes was my reduced reliance on medical interventions. I realized that many of my symptoms and issues could not be effectively treated, and many common medical treatments were not suitable for me. Rather than trying to "solve" these issues, I focused on maintaining the quality of each day, striving to make them as pleasant and productive as possible. This mindset change allowed me to let go of future-focused anxieties and focus on the present moment.
Post-Diagnosis Adjustments
Since my diagnosis, I have become much more careful with stretching and choosing the right types of exercise. Occasionally, I overdo it, but I have learned to be more mindful and responsive to my body's limits. Additionally, the diagnosis helped me to avoid the endless cycle of seeking answers, often leading to disappointment.
When things change or my disease progresses, I still grieve, but the temporary nature of these emotions has become clearer over time. I no longer dwell on negative feelings, allowing myself to move forward more quickly.
Implications for Care
An EDS diagnosis could have a number of impactful outcomes for a patient's care:
Testing for Other Conditions
If you experience symptoms such as dizziness and fainting, you might need to be tested for POTS (Postural Orthostatic Tachycardia Syndrome), and if you have nausea and digestive issues, you could be tested for gastroparesis. Understanding these conditions can further inform your care plan.
Serious Consideration from Doctors
Clinicians and specialists are more likely to take you seriously when you complain of pain. This can lead to better pain management and potentially the prescription of medication to address symptoms. It's important to continue to communicate openly and honestly with your healthcare providers.
Eligibility for Disability
An official diagnosis of EDS could make you eligible for disability benefits, which can offer financial support and peace of mind. These benefits can help alleviate some of the stress and burden associated with chronic illness.
Professional Guidance and Limitations
A formal diagnosis can bring closure and validation, helping to debunk the notion that one's pain is imagined or not real. It also allows your care team to implement treatment protocols that are tailored to your unique needs, such as adjusting exercise routines and physical therapy approaches.
For example, if you are undergoing physical therapy and are found to have EDS, your therapist might skip the stretching portion of your routine and opt for different exercises that are less likely to exacerbate joint instability. If you suspect you might have EDS, it is strongly recommended to consult with an expert in the condition to guide your treatment plan.
Overall, a diagnosis of EDS not only brings clarity and validation to your experience of pain and symptoms but also provides a roadmap for making informed decisions about your care. It is both a new beginning and a continuation of your journey to a healthier, more manageable life.