Nat’s Story

Nat is a bright, high achieving artist. Loves to draw and an honor student in spite of her disability. She’s a unique and old soul.

Our journey started Christmas, December 2021. We had avoided known infection until the school break when she became sick. She wasn’t hospitalized but was seriously ill for 2 weeks.

She returned to school for a short while in January but was not fully recovered. She was so fatigued, pale and having abdominal pain and increasing GI symptoms. We returned to the Dr. We were told at that time it was mono/EBV and the fatigue was just something that comes with it. She was placed on homebound but started developing new symptoms while others lingered. I felt it was long Covid and self refered to a local Long COVID clinic. Her PCP agreed and that’s where the Long COVID/Post Covid symdrome diagnosis came to be.

PACS/LC is a fight on every front, you are at war with you body and mind. While you’re fighting for your life, sometimes literally, you’re also fighting the school system, medical system, insurance company and anyone else that you must to get your child or family member care and support. Sometimes the only support you have are those in this army that are fighting with you. We have faced truancy for medical absences, faced homebound education challenges, fought to form and implement the first IEP in our area for (Long)COVID related cognitive challenges. 504 for physical disabilities.

Medical care is next to nothing and sometimes worthless in Southwest Virginia. We have put thousands of miles on the car traveling to see specialists that either have super long wait-lists waiting up to a year to get there and if they believe you they will start out testing and trying to treat these symptoms but in the end dismiss you with doing nothing. 2 1/2 years of waiting, suffering unable to function and barely able to move to get there and hear “let’s test this or try this, ghdn when that is normal, it’s “Goodbye come back in a year or when you get worse” or “you need higher care” but not refer you. People don’t understand and don’t care anymore. (Long )COVID is the swear word people shoosh you when you speak it.

We finally get referrals to more educated and willing doctors and loads of great referrals, and treatment options for the variety of systems destroyed by this infection, for the insurance to deny the out of state care. Reason for denial “out of network, in-state options exist” like we’ve not seen 1,2,3 of these doctors already to be told you have XYZ but we don’t know what to do or there’s nothing we can do.

Our family and friends support us the best they can but don’t know how to help. They don’t know what to do because we don’t know what to do. It’s not as simple as “we’ll go to the Dr,” as we’ve been told.

Long Covid or as I prefer post Covid Syndrome is not an extension of the Covid infection, they ardnt contagious but they are experiencing a legitimate cluster of illnesses and disorders caused by the infection. They are having debilitating symptoms and aren’t the same people physically, cognitively or emotionally due to untreated chronic illness. We need treatment for symptoms, support, waivers and funding. They deserve a quality of life.

We need multidisciplinary care at appropriate facilities, states need to have Medicaid waivers and approval of coverage for the handful of specialists available. Schools need education for plans to identify children with needs. IEP and 504s in a timely manner and to fit the needs.

States need to evaluate their own attendance policies and identify who is struggling with Covid related illnesses. It’s absurd these policies.