Alone

I have had Migraines since I was seven, and for years I felt so alone. 

When I was diagnosed with Migraines, my little sister (who I will call K) had already been diagnosed with Juvenile Rheumatoid Arthritis. Compared to Migraines, JRA is more “visible” – joints swell up, inflammation markers in the blood rise, and JRA can cause joint damage. She also developed other health issues, which all presented with obvious physical symptoms. Migraines, on the other hand, are truly invisible; there are no outward signs or conclusive tests. 

To make matters worse, my parents didn’t get Migraines. They ran in my family – my maternal grandfather and aunt got a few a year – but they completely skipped my mother. To make matters worse, I got them a lot. 

Sibling rivalry is normal, but what grew between K and me was entirely different. She resented me for being healthier than her, while I resented her for the attention she received because of her health. I wasn’t jealous that she was sick; I was hurt that nobody recognized that I was sick too. I always felt so alone – my parents were sympathetic and understanding with K, but never with me. K had special 504 plans while I had to fight the school nurse to go home with a Migraine. Our family vacations were catered to K’s health requirements, while my parents did not (or could not) hide their frustration when a Migraine interrupted plans. 

As I got older, I developed more health issues – I was in my early 20s when I was diagnosed with R.A. myself, as well as Fibromyalgia. Rather than bring us closer together, my new diagnosis further divided us – K felt as if I was competing. When I received Federal Disability, she accused me of giving in to my conditions, rather than fight for my health. Our fighting became worse, and now we don’t even talk.

My anger, hurt, and resentment have long since faded away. I no longer blame my parents for their misunderstandings, and their understanding of my Migraines has greatly improved. I don’t blame K for her anger – she has lived a hard life – but I am disappointed and frustrated. I keep hoping that, as she gets older, she’ll come to her own acceptance of our similar and different conditions. Together, we could be great allies.

But until then, I am still alone.

Still Learning

I’ve had Migraines all my life – I was diagnosed at age seven. 

I’ve often wondered if my Migraines started earlier than that, but simply went undiagnosed. I was often sick as a young child. I was sick for every holiday, vomiting and unable to attend any big social event. Other days, I would wake up sick, stay home from school because I was throwing up, and then wake up after a nap completely fine. I never complained about my head, but these attacks sound like Migraines to me. 

While I never complained about my head, I did complain about my hair. I would cry when my mother brushed or washed my hair, saying my hair hurt. I never had any proof that this was connected to my Migraines – nor any reason to suspect so – but I was convinced. 

And then, the other day, I heard about Allodynia. 

Allodynia is a condition where small simple touches can cause extreme pain. With Allodynia, the nerves that carry pain receptors misfire, sending pain signals in response to touch or movement.  According to the American Migraine Foundation, “40% to 70% of people experience Allodynia when having a migraine attack.” 

There are three types of Allodynia: static, dynamic, and thermal. Thermal Allodynia is pain as a response to mild changes in temperature, and Static Allodynia is a result from light touch on the skin. Dynamic Allodynia, though, is pain with movement across the skin, and many describe it by saying “my hair hurts.”

My discoveries about Allodynia, and possibly having it as a child, fascinate me. This condition is similar to Fibromyalgia, which I was diagnosed with at 24. As sad as it is to think that I may have had pain since infancy, it is refreshing to have answers. I finally have a valid theory about my childhood pain, and now I can tell my parents that I was more than just an over-dramatic child. 

Sources:

  1. https://americanmigrainefoundation.org/resource-library/allodynia-when-touch-hurts-but-shouldnt/
  2. https://americanmigrainefoundation.org/resource-library/what-to-know-about-allodynia/