My girl has gone Missing

Author Anonymous 

This article was first published in the M.E. Awareness NZ social media campaign for International ME Awareness Day, 12th May 2019.

My girl was always in what they call "robust health". She was rarely sick, and when she did get sick, it lasted less than 24 hours. She was active, sporty and phenomenally intelligent.

In 2016, everything changed. 

In 2016, aged 14, my girl went missing. 

She was diagnosed with Glandular Fever in August, after a month of feeling exhausted all the time. Initially, she slept 20 hours a day. With a regimented diet and supplements we eventually got her to where 14 hours of sleep per day sufficed, and she was able to attend school two half days a week. 

In January 2017, she tested positive for antibodies to glandular fever. We celebrated, because this would mean that "any day now" she would be back to normal. 

Except, she wasn't. Her exhaustion got worse. Her sharp wit and mind were gone. She could no longer read a paragraph and remember what she had read only a moment ago. She developed 24x7 headaches that we would later learn were migraines. She was always lightheaded, always dizzy and always nauseous. She had random body pains that would come, last a few hours, days or weeks, then disappear. She was always exhausted but struggled to sleep at night. 

We were referred to a pediatrician who announced as we walked in the door, without ever having spoken to my daughter or having seen her before, "So the diagnosis is now CFS". This was the extent of our instruction into what we were dealing with. No explanation of what that meant, or how to manage school, or what NOT to do. She simply prescribed some medication to help my daughter sleep and sent us on our way. After two such completely useless visits, we stopped making the 2 hour trek to see this doctor, as it was completely pointless - no tests were ever done and nothing of actual use was ever offered. It was simply not worth the inevitable 4 day long recovery period my daughter would have to endure just to see her. 

We limped along like this until the end of 2017, with a little bit of school here and there, a little tutoring, zero help from medical professionals and zero understanding of the illness we were dealing with. At this stage, we still believed CFS was just a severe form of Glandular Fever and she would wake up one day soon and be all better. 

At the end of Term 1, 2018, she went on a day trip with her favourite elective. 

She never made it back to school.

She crashed hard and as of today, one year on, has not recovered. Barring one incredibly loyal friend who consistently visits her on a weekly basis, she has lost all of her friends because she is missing from her life. She has lost her hobbies, even the ones that take no physical effort (like reading) because, what the physical impact of ME doesn't take away, the mental impact does. She is medicated to control her symptoms, treading water, in constant pain, trying to maintain hope that one day, someone will find a cure or she will wake up magically in remission.

This is the illness that just keeps on giving. 

The past year, we have learned much about what it is we are dealing with - but not from doctors, who have been consistently poorly informed. It was only through being put in contact with parent-led online support groups that we finally gained understanding of how to help her, and learned to set more appropriate expectations for her. We've learned that the very worst thing a person with ME can do is push themselves, as we were encouraged to have her do - this can lead to crashes that can last not just days or weeks, but months or years. Much of the medical advice we were given was flat out wrong. One "specialist" prescribed medication for her in such high doses, she was borderline catatonic for two months until we worked out what was going on and slowly tapered back her dosage down to just a third of what was prescribed. 

The past two years have been full of heartbreak, grief, and frustration. This illness is devastating enough as it is; to have to deal with the staggering amount of misinformation out there on top of that, and with the bewildering lack of knowledge within the medical community on top of it all is heartbreaking and frustrating. As a parent of a child with this illness, you need to be your child's full time carer, administrator, advocate and medical researcher. You need to educate your doctors, your child's school, government departments and every single person you meet. You fight the "yuppie flu" stigma and misinformation every day, everywhere you turn. And you do all of this while grieving the life you thought your child would have, the future you thought they would have, the pain they are in and the grief they endure, while running your household, parenting other children, and, in most cases, working a paid job. It is an exhausting existence but you do it because you don't have a choice.

We are still hopeful for a "normal" future for our girl. But research is needed desperately. We need a cure, and we need it now. We are losing people to this illness - millions are missing (from) their lives, and far too many each year decide life is not worth living after decades of being bed bound with it. 

Please help us end this disease once and for all.