As people with and affected by rare and chronic illnesses, many of us have encountered times when we needed help advocating for our health care and basic human rights and dignity.
Some times we get to be our own self advocates, and at other times we need others to step up. Loved ones, caregivers, medical professionals and other allies to the rights and basic human dignity of patients living with chronic pain and illness are invaluable. Especially since mast cell disorders are so often unheard of to first responders and many doctors and nurses. Being sick and needing help from people who may not know about mast cell disorders or worse may doubt you are experiencing a life threatening emergency can be exhausting, terrifying, and down right demoralizing.
Thankfully there are those out there who are making the time to educate themselves and others. Special thanks to all the loved ones, friends, volunteers, and medical and personal caregivers who go the extra mile to be there when someone is unable to be their own advocate.
Here we will look at how to empower ourselves and others to stand up for our basic rights to good health and quality of life. What each of us expects and needs is unique, but we can all hope for the best quality of life possible and hopefully here we can discuss some techniques towards achieving that.
We do not have to become our mast cell disorder. It does not have to be the entirety of our being at every moment. What do you enjoy that you can you focus on today for 5 minutes? Please give it a try, and take a joy break! We all need them be we sick, healthy, young or old, working or on disability.
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