You’re Not Alone – Family Drives Everyone Crazy!

Here’s an uncomfortable topic: family. Let me be brutally honest with you. I don’t like to talk about mine. I’m very proud of the one I’m building with my husband (and I get what a blessing that is) but the one I’m derived from is filled with heartache. Recently I’ve seen a lot of posts from the Neuromyelitis Optica (NMO) community about the lack of support from family and trust me, I get it. So in true transparent fashion, let’s talk about it.

I’ll start by saying that I will always love my family. It’s in my DNA to always acknowledge my roots despite how unfavourable they are. But yes, when NMO happened (and continues to happen) those roots have failed me. When I suffered my first major attack my Mother and sister were in Europe visiting family. My Dad saw the severity of my attack when he visited me in the hospital but somehow he didn’t articulate that to them. It took my Mom an entire month before she called me to check in. My brothers didn’t bother to visit me in the hospital or even afterwards. I think one of them sent me a “hey, I’m worried about you” email months later. If I had ever needed my family it was then. I was scared, unable to feel the bottom half of my body and couldn’t walk. I felt betrayed by all of them and alone.

There’s a catch with relationships. When you need support the most it’s when you aren’t able to ask for it. That’s when you truly discover how strong (or in my case, flawed) said relationship is.

For me, I went through the full range of emotions. I was angry, I made excuses for them, I grew patient then impatient. It’s been 4 years since that attack. I’ve had more since then and also great successes. In both cases I’ve realized that my family will always continue to fail me and yes, that makes me sad. A little part of me still waits for my family to finally figure it out but in the meantime what’s best for my mental (and ultimately physical) health is distance from them. It wasn’t a decision I made lightly and it isn’t the right one for everyone struggling with family difficulties but do know it’s an option.

What I’ve learned is that you can’t change people no matter how desperate you are to try.

So, my advice? Focus on the relationships that do make a difference. In those first dark days of NMO I had 42 friends and other family visit me in the hospital. My then future sister in law helped me get dressed every morning on her way to work. My then future mother in law brought me a care package of necessities. My cousins and then future husband had my pug waiting just out the hospital doors for a cuddle. People I thought were just acquaintances stopped in to keep me company and offer their support. These are the relationships I grow. These are the relationships that I now call family.


  1. I can totally relate. I think you are absolutely right-focus on the people who will circle their wagons for you and have your back. Don’t waste any energy on those who can’t or won’t support you.

    I think I’ve learned over time that people will love you as much as they can. It’s just how it is. We expect family to be there for us because they are blood, but seldom are those expectations met and then we feel bad about ourselves for not being worthy of their time and close attention and resentful of their apathy. All it does is make us miserable. Meanwhile, there are some very loving and supportive individuals in our lives who WANT to be there for us and are just waiting for an opportunity to feel like we need them and they can DO something for us so that they don’t feel quite so helpless in the face of this disease.

    There is always a choice: Do we see the glass as half empty or half full? My glass is half full so I’m drinking a toast to all the people in my sacred circle who let me know in ways big and small that I am never alone.

    Comment by Lelainia Lloyd on October 22, 2013 at 3:10 am

  2. PJ

    The family we create is the one we can rely on. They’re the one we choose. You’ll always be part of my family.

    Comment by PJ on November 25, 2013 at 3:15 pm

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