Struggles to get Support for Long Covid

I believe most people have good intentions and want to help, but we are still human and fallible. We have our own prejudices, social conditioning, egocentricity, and blind spots. There is so much in this world that is not known, yet many people take the easier path of defaulting to cognitive biases.

Getting support for long covid and other invisible or rare diseases has been fraught with high barriers to receiving medical care, social and financial support, especially for women who are routinely medically gaslighted. They diagnose these diseases through symptoms or have to investigate more deeply to figure out what labs/tests to order for diagnoses. We’re shuffled from one specialist to another, each with different theories. Often it’s a lengthy, exhausting process of elimination. Many symptoms are internal, not readily visible, or externally measurable, so we can easily dismiss the symptoms as anxiety, “hysteria” or psychosomatic.

We who are objectively sick even doubt ourselves, give up, and suffer in silence. Our ability to work is limited, so we have a chronic, unpredictable, difficult to treat illness, while worrying about how to pay bills, fighting with insurance companies, navigating the maze to apply for disability, which takes at least a year or longer. Typically, you’re denied and hire an attorney to appeal and still get denied.

You’re struggling to function, to get through each day while your family may doubt you’re really sick or don’t help you very much because you don’t look “that” sick. There are millions of us going through this. I’m thankful we have each other in our support groups who truly understand the challenges we face. It’s such a big hairy mess. The system needs drastic overhauling. People are falling through the cracks. Some have lost everything and are now homeless because they are sick and can’t get sufficient help. ♡

https://www.longhauler-advocacy.org/resources

https://www.c19recoveryawareness.com/

https://www.survivorcorps.com/mission

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