I’ve written about my daughter many times before, I’ve written about my best friend, and well since this is her blog you all know her too. I’ve even written about myself and how I try to be the best support system for them that I can be. What I haven’t written about is the frustration that often stems from being on the outside looking in at them. I just don’t understand, and I can’t.
My life has its medical issues, but in the long view of it all they’re minor and well controlled by medication. I can usually do whatever it is that I want to and am willing to put the effort into. I can decide to push it some days, and I can decide to eat right or wrong, and the consequences are generally predictable and short lived. I am as healthy as I look from the outside.
I cannot understand how my daughter can go weeks where she hurts so badly that she is afraid to eat food that has taste. I cannot understand how some days she can look pale and sick but say she’s fine and other days she can look fine and say she’s miserable.
I cannot understand how something as simple as driving can knock my best friend down for days, even if it’s just sitting. I cannot understand how the minute by minute weighing and measuring of what she feels has to be done, and what her body is capable of doing weighs on her mentally.
I cannot understand how my well meaning suggestions and help can actually make things so much worse for both of them. I cannot understand how something that seems to plain to me is so hard for them. I cannot understand that choosing to care for themselves often means neglecting things that are important to them, so they don’t. They both push and push and push until they fall down, because they want to be everything that they can be, they want to be the person they could be without sickness.
I just cannot and to be very honest, I don’t want to. I am so thankful for my health so that I can do what I can for them. I do not know how they feel, I have no clue what kind of mental fight it is for them to decide to get out of bed and do what needs to be done. I cannot understand that asking them to spend time out and about doing something fun may have consequences that are far reaching. Shopping, lunch and a movie can send them to the ER, but they still want to go.
What I can understand is that I need to be more understanding. I need to stop trying to put myself in their place, because it isn’t possible. I cannot, no matter how empathetic I am, know what they feel like. I can understand that they want to do the things with friends and family that seem so easy for us. I can understand that for them laying in bed and resting is more than self-care it’s self preservation. I can understand that even when they’ve done very little of what they feel like they should, they’re so mentally exhausted that they aren’t themselves. I can understand that they know what they need so much more than I do.
Finally, and most importantly I MUST understand that in order to support them, I MUST try to understand that no matter what they choose to do, they are doing their best to walk this amazingly thin tightrope of living life, and that I cannot understand the choices they’re making so I MUST stop judging them.