Now, my youngest daughter is battling the most intense symptoms. The once annoyingly energetic girl is often found lying in bed or on our favorite brown recliner, curled up under blankets. She’s reduced to constant sleep or simply lying down because of migraines and constant abdominal pain and nausea.
This social butterfly of mine now has to home-school because she has far more bad days than good. She has a frustrating cycle of either feeling really bad or feeling great and getting so over-excited about “finally not feeling sick” that she overdoes it and makes herself ill again.
It’s constantly telling her “no.”
It’s non-stop doctor appointments, begging them to run more tests and discover something that will help her.
Yet 2 years and 10 doctors later, we’re still not much further along than where we started. We do have two diagnoses. We’ve obtained an Epstein-Barr virus and a Hashimoto’s Disease diagnosis. Both of which, unfortunately, tend to stump doctors. There is no “do this and you’ll be all better” cure. People have accused my daughter of “faking it” or being overly dramatic. But those people are not at home with her every day.
These “invisible disorders” are becoming far more common. Many people have heard of them, but little is known about them. Unfortunately, this includes doctors. The medical community, by and large, is unequipped to deal with, and uneducated about, these conditions.
It’s not to say that they aren’t trying, but little is known about what causes these conditions and how to treat them. For the most part, they have become grouped together in the category of Auto-Immune Diseases: Lyme disease; Fibromyalgia; Hashimoto’s; Grave’s; Epstein-Barr; Lupus; rheumatoid arthritis. These are the most commonly known disorder, but there’s still relatively little information associated with them.
It’s frustrating. Sort of knowing what’s wrong, but still not knowing exactly what is causing the symptoms. How is that even possible?! As I type this sentence I think, “That doesn’t even make sense.”
As I research more about these disorders, I have learned that much of the healing process centers around big dietary changes, finding the right vitamins/supplements, and somehow finding other “root cause” problems in the body that are triggering this auto-immune response. It’s almost too much at times.
I consider myself a fairly well-educated woman. I do my own research on things. I’m no doctor, but I’m not a fool either. However, the endless discussions on what it might be can be so overwhelming. Joining parent groups on Facebook has been very helpful. Some of the women have become experts on these very complicated disorders and are more than ready to share their knowledge and give advice. It helps to know that we are not alone. That this is real, that this is not normal or okay, and that we are not crazy.
I don’t know everything about the specific diseases we are dealing with. I never will. But I will say this: I will not stop learning, researching, asking questions and digging until I find a way to restore myself and my daughters to normal health.
I cannot give up. And if you or your children are struggling with an invisible disorder, I encourage you to keep fighting to find a cure. Our battle may be against invisible disorders, but we are fighting them just the same, and it’s about time to shed some light on them. My goal is to lay the foundation for future generations.
Don’t ever give up, you are not alone.
I am including several resources that have encouraged and helped me on our journey so far. I hope they prove helpful to you as well.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.