I was about two years old when she was born. My little sister, my built-in best friend for life. Someone I could play with, fight with, cry with, share with, and talk with. Some time passes, I eagerly wait for her to catch up to me. I’m still waiting.

I’ve never had a conversation with my sister, she has never stolen my clothes or yelled at me for borrowing shoes without asking, and she has never been my friend. She was the bandit of my childhood, the thief sleeping in the bed across the room. If she and I weren’t so close in age, maybe things would be different, but I only know things as what they were and are now. When I was almost four years old, my sister was diagnosed with Rett Syndrome.

Rett Syndrome is a neurological disorder found most commonly in females. It is a disorder that one is born with, and it is most easily described as a mixture of epilepsy, cerebral palsy, anxiety, and autism. Girls with this disorder, for the most part, never speak, walk properly, or communicate without some sort of device assisting them. Being as we are only about two years apart in age, I was at a stage in my life where I required emotional connection given through validation and attention from my parents when she was diagnosed at two years old.

Some of my earliest memories are her being doted on and me watching from afar. Now, being that I’m older and know better, I know she wasn’t being doted on but rather being helped and attended to, but at the time all I could see was her getting attention I desperately craved. The fourth of July after she was diagnosed, my parents invited our friends and family over for a barbecue. Everyone flocked to her. Sympathetic looks clouded their faces as they spoke to my parents and glanced at my sister, nobody said more than a greeting to me. I decided to take matters into my own hands. My parents and everyone who came into my house since she was diagnosed had only had eyes for her, why? Because she was sick. I thought, maybe if I were hurt they would pay attention to me too! I made my way up the stairs into the bathroom and retrieved an ace bandage from the drawer under the sink. I wrapped my leg in it and stumbled back down to the barbecue. I stood and I waited, waited for someone to see. Nobody looked, so I screamed. I screamed that my leg had been broken and that I needed help. Everyone laughed. They must have thought it silly; a small child pretending to be hurt for attention. The last thing I remember from that day is gritting my teeth and staring at her through hot tears.

I adopted the mindset I had that day of receiving attention by being hurt, and I’ve only just recently begun to be able to shake it. Since I, according to my memory, did not get the attention I needed as a young child, I’ve had a very hard time dealing with certain aspects of my life. I’ve accepted incredibly bad treatment from friends and boyfriends just because I was afraid they would leave me, for a very long time I assumed my parents did not care about me, and I built a very unfortunate resentment towards my sister.

I’m sure by now you’ve already decided what kind of person I am. How could someone have resentment for a girl who has never spoken a bad word about anyone, or any words for that matter? A girl who didn’t ask to be born like this? A girl who is my sister? I always struggle at this point of the conversation when I try to explain my situation to others. How do I come back from that? It’s very hard to explain to people that the things that happen to you as a young child stick with you forever, and if they don’t, they’re very hard to shake. I was so young that the resentment and negative behaviors I adopted are built in deep today. I’m sorry if you think I’m a bad person, but I know there are other people like me out there.

My entire life, my mother has pointed out people that have disabled siblings to me and asked me why I can’t love my sister and interact with her like they do? And my entire life I’ve been told my reasoning isn’t real, and that how I feel is my fault. I’ll level with you, I could have made efforts to change this for myself, but by the time I understood the root of my feelings I was too old to make much of a difference. Don’t get me wrong, I don’t hate my sister. I just am indifferent to her. It took a long time and a lot of heartaches to push me to that, and I won’t toss the blame entirely on the people around me, but the way the events of my past have played out has made me into who I am as I’m writing this. I want to apologize to my mother and my father and anyone else that has ever gotten angry with me for how I feel, but I don’t know what to be sorry for. She has given me countless positive experiences that I wouldn’t have if she wasn’t the way she is, and I don’t discount those experiences at all; I just can’t seem to form the bond with her that I know would make the people around me happy. Here is where my main point comes to light: what about me?

What about me? Why did nobody ever ask how this affected me? Everyone was so busy with her, that nobody bothered to realize just how much her disability had impacted me. I realize how this sounds, and I know it doesn’t sound good, but there really is no simpler way to say it. I’m sure there are people out there who have felt how I feel, and I’m sure they know just how shamefully cliché it is to say, “what about me?” in this situation. The siblings of people with disabilities, especially those that are close in age, are more affected by it than you would think. I have lived my life with the fear of abandonment so crippling and fierce, I’ve let friends, boyfriends, and even family members, walk all over me and abuse me without speaking up just because I was afraid they would leave me and I would lose that attention — that human connection I need to function. It took years of therapy and mindfulness exercises to realize that more likely than not, the root of these self-destructive behaviors is the experiences I had and how I perceived them when I was a young child.

Again, I’m sure you’re disappointed with my feelings, and I understand why. But know that I will never flat out blame my sister for what has happened to me and the negative attributes I have. But I will say that she has played a significant role in them. I know that’s not what anyone wants to hear, but it is the truth.

Next time you see a friend or a family member with a disabled sibling, ask them how they are. Ask them how they are feeling and if they’re okay. Nothing breaks a child in that situation quite like seeing their loved ones walk right past them to the more interesting child. I can almost guarantee that they see that as them getting attention, not help. Looking back, I know a good lot of the time she was getting help, not attention, but while it was happening I didn’t understand that; and understanding that now does not change the experience and how it made me feel.

I’ve been called selfish, cold, and a monster by people as close to me as my family when I try to voice my feelings on this; and maybe these things are true, but they don’t invalidate my experiences and how they shaped me. People need to understand that feeling this way is not selfish, and it deserves to be acknowledged instead of shamed into submission.