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.

Guilt

My biggest problem with Migraines comes in the form of guilt – I always feel guilty. As a wife, I am constantly relying on my husband to work and pay the bills as well as do the necessary chores. I worry about having a child because I dread the days I will let them down. 

Turns out, I’m not alone. 

According to Clinical Science News, 1 in 10 Migraine sufferers delay having children because of their guilt. 78% of Migraineurs reported feeling as if they would be a better partner if they did not have Migraines, and 44% reported that Migraines prevented them from having a relationship. These numbers are both depressing and validating. 

Part of the problem – the root of the guilt – comes from the public stigma of Migraines. Despite advances in the understanding of Migraines, many people still think of them as “just a headache.” Not everyone understands why I can’t just push through a headache and do what needs to be done. They don’t know that I spent all of my energy just calling them to cancel; they don’t know that I’ll spend all day in bed, aside from the occasional trip to the bathroom to throw up. 

Migraine Buddy – the leading Migraine tracking app – suggest four things to combat the guilt.

  1. Take Control

Migraines often feel like an attack on our bodies, and can leave us feeling out of control. It is important to take control where we can – our treatments. If your doctor doesn’t seem to take your Migraines seriously, find a new doctor. Try treatments – pharmaceutical or homeopathic – and see what works. Remember: this is your body; you DO have some control. 

  1. Join a Community

Especially with the stigma of Migraines, it is easy to feel alone. No one truly understands Migraines unless they get them too. Find blogs (like mine) to follow, join Facebook support groups, or Migraine based chat forums. Isolation adds to guilt, making it feel like this is just your problem. That’s not true – You are not alone. 

  1. Be Kind to Yourself

It is really easy to blame yourself for your Migraines, especially when it feels like others blame you. Even if others don’t seem to understand, you need to do what is right for you. While it is important to push yourself when you can, learn when you need to take it easy. Do what you need to do to get past a Migraine, and love yourself for your strength. 

  1. Advocate

Talk about your Migraines. Explain to others what’s really going on – both the science of a Migraine and what it feels like to you. When people make snide comments or seem dismissive, educate them about the reality of living with Migraines. You will always be your best advocate. 

It is really easy to know what to do, and much harder to actually do it. While I’ve done some of these steps, I’m still struggling with others. Being kind to myself – and not blaming myself – is the hardest for me; I think it is the hardest for most. But guilt can cause stress, which can trigger a Migraine, so it is important to try to let go. We are all doing the best we can, and we need to accept that ourselves before convincing others. 

Sources:

  1. https://www.mdedge.com/psychiatry/article/172921/pain/migraine-takes-toll-intimate-relationships
  2. https://migrainebuddy.com/migraine/2019/7/12/migraine-guilt-understanding-amp-letting-go