Is This YOU?
I developed _x_(symptoms) from _x_(event) and I just want to know if I should have hope. It's been _x_ amount of time living with these symptoms and I can't find any help. My doctor doesn't know what to do and tells me it's anxiety. I can't _x_(work, study etc). All my tests come back normal and I look fine so nobody believes me. They tell me to exercise and drink green juice but I can't sleep because my body won't stop shaking.
If I find a doctor and can get an appointment insurance never approves anything. I've applied for disability twice and am waiting on my court date. I don't even know if I'll be able to shower, drive and stand up in court without getting tunnel vision. I have no idea what to do and can't imagine living like this forever.
What have you done???
I'm glad you reached out...
First, YOU ARE NOT ALONE So many people are experiencing similar medical journeys. I wish I could give you a guide that has everything you need to know, but the harsh truth is that there really isn't one. Worse, millions of Americans have been through this for years with little progression. There are amazing resources among the ME/CFS (Myalgic Encephalomyelitis/chronic fatigue syndrome), Dysautonomia (autonomic dysfunction like POTS & postural hypotension), MCAS (Mast Cell Activation Syndrome like multiple chemical sensitivities causing allergic reactions), EDS (Ehler's-Danlos Syndrome forms of hyper mobility syndrome and connective tissue disorders) and Lyme communities which have been long under-acknowledged, cared for and assisted. These, other various post infectious, chronic and invisible illnesses, neurodivergence and disability organizations have community resources. However, personal testimony speaks volumes. So here's a bit of what I've learned navigating private and SS disability, insurance approval for treatments & interventions for a disease which did, and still does, not have a name with a unified definition. This is my second job while rehabilitation and recovering as much as possible became my full-time job and priority.
Additionally, no longer working, the isolation of immunocompromised, time spent navigating the healthcare & adjacent system with fluctuating energy transform your life. While a new web is being created the discomfort, possibly sadness, of the old dissipating has the potential for a life shift. There's an abundance of probabilities that will effect the patient and their support system.
Hey - Shift Happens!
Below are some areas I whish I had guidance on and gained the most useful knowledge. For more medical related resources check out the Tools page. I wish for ease and grace to all in their journey.
Disclaimer: The following information is taken from what I have learned from personal experience and not medical advice. Please consult with your medical professionals. Much is pictures of materials copied from what was provided to me through programs I attended and not my original content. My intention is to share knowledge I have gained throughout my medical journey in hopes that it will help others. Namaste Liza.
Social Security Administration
EEOC: ADA Q&A
Pandemic Patients Disability Resources
National Financial Resource Directory
Community Health Advocates
Patient Engagement Fair Market Calculator
NeedyMeds: Retreats, Camps & Programs for Chronic, Serious or Life Threatening Illness
Parenting a Child with a Life Limiting Illness Tool Kit
SIBSHOP: Online sibling support
WellSpouse: Support for Spousal Caregivers
The Invisible Kingdom, Meghan O'Rourke
9 Social Tips for Having a Social Life with Chronic Illness