Some quotes from the article:
Cut off from established pathways for managing a chronic illness, many Vermonters with long Covid have reported living in a sort of permanent limbo. They have faced stigma and disbelief from loved ones, colleagues and people in their community. They have struggled to access workplace accommodations and social services for people with disabilities.
A medication for 80k/year, what could that be?
In an email, Ali said that she’d recently learned that her insurer might no longer cover a medication she’d been taking for years. It would cost her $80,000 annually out of pocket, she said.
“I was a lot more functional on the medication, I was considering working more hours while still on the med (in the study),” wrote Ali, who requested VTDigger use only her first name, citing ongoing disputes with her employer. “I can’t work full time because I can’t get this med,” but “because I can’t work full time it makes my insurance cost even more.”
“The most positive takeaway I have had from all of this is reinforcement of my knowledge that I have the capability to self-educate and self-advocate within a system that seems to be working against providing care,” Cota added. “Will that change in the future? I really don’t know, and with the current administration’s hostility toward medical research and our medical system in general, I don’t think that will be improving any time soon.”
Despite those many different experiences of long Covid, Coombs noted one experience that seemed very common: a widespread lack of understanding of “what this actually is and what people are facing,” she said.
“We’re constantly torn down for just being sick, and continue to be sick from something no one wants to admit is a problem,” she said.
The lack of recognition can even seep into personal relationships. Ali said that it took some time for the people in her life to understand just how debilitating chronic fatigue can be.
“My parents didn’t totally believe me about how sick I was,” she said. “I’m like, ‘No, I actually can’t go grocery shopping with you or help you with your stuff, because I feel so horrendous.’”
The negative messages can lead some long Covid patients to doubt their own experiences. Mary Kate Shanahan, a birth doula based in Winooski, said she felt embarrassed and worried about others’ judgment the first time she asked to use a wheelchair at the airport.
Ali, the nurse with long Covid, said that she had to submit and resubmit paperwork multiple times to receive her benefits under the Family and Medical Leave Act. Meanwhile, she ran out of medical leave to use, even though she was still in the midst of her worst symptoms.
“I was just kind of calling out of work sometimes and hoping that I wouldn’t get in trouble for that,’” she said. “And I’m like, ‘Please don’t fire me, because I need my benefits to pay for all of this, like, crazy amounts of testing and all the medications and everything.”
vtdigger.org