I want to hear about YOUR chronic illness ❤️🩹
I have been struggling with a mystery illness for 8 years now and I still don’t have a confirmed diagnosis. So many people deal with chronic illnesses every day, and I want to hear your story and your journey to getting diagnosed!
In the last 8 years since I was 20 years old I’ve had 8 extensive vascular surgeries on both of my legs. Along with my vascular surgeries and blood clotting problems I’ve had so many other symptoms and no doctor can seem to put all of these pieces together. I have low blood pressure, headaches/migraines, bruising easily, so many skin rashes and flares, severe adhesive tape allergy, constant fatigue, muscle and joint pain, chills and always cold, gut issues, cystic acne. Anyone dealing with chronic illness knows how exhausting it is living day to day and on days of a flare up it can be debilitating. My initial diagnosis was for a very rare vascular condition called Popliteal Artery Entrapment Syndrome, and ever since I’ve been getting sicker and my body is literally attacking itself.
I want to hear how you advocate for yourself and your story to finding your diagnosis! It can be so hard and I’d love to build a community for everyone to connect. So many doctors dismiss these symptoms for anxiety and prescribe medications, anyone else experiencing that?
I am currently writing my own memoir on my long journey and what I’ve learned along the way and how I cope and advocate for testing from doctors. Would you be interested in this story when published?
#chronicillnesscommunity #chronicillness #health #chronicillnessjourney #chronicillnesswarrior
Chronic illnesses can be a complex journey, not just physically but also emotionally. Many individuals experience a significant delay in diagnosis, often facing misunderstandings from healthcare professionals. Conditions like fibromyalgia, chronic fatigue syndrome, and autoimmune diseases often come with a multitude of symptoms that can be hard to communicate. Establishing a support network is crucial; sharing experiences can not only provide comfort but also empower individuals to advocate for their own health. Online communities and forums have become invaluable resources for those struggling with chronic illness. They offer a platform for sharing valuable information, suggestions for coping mechanisms, and even advice on navigating healthcare systems. Patients frequently discuss their experiences with various treatments, including alternative therapies and lifestyle adjustments that can help alleviate symptoms. Additionally, understanding the psychological impact of living with chronic illness is vital, as many individuals face anxiety and depression fueled by their condition. It’s essential that discussions around chronic illness include these broader aspects, enabling a more holistic approach to health and well-being. Acknowledging each other's stories is the first step towards a stronger community that uplifts and advocates for all those affected.
I’m 19 and got diagnosed with fibromyalgia this year. My complete diagnosis list so far: ADHD OCD Bipolar (I’m challenging this, I don’t think it’s accurate) *Suspected* autism Fibromyalgia POTS Unspecified hypermobility **Suspected** endometriosis. I have forearm crutches to support my legs on my bad days/when my joints can’t hold my weight.