Sure, it's easy to sit and talk about what I am going through. All my symptoms can be rattled off and placed on a list. Many of those can be treated with medication or controlled with lifestyle changes. What about the darker side of this illness? The side maybe even I am not qualified to speak on, as I am not an outsider, I am a suffer.
My family has been impacted and this is another reason Kicksomeas.com exist. Not just for those of us who have the invisible illness, but for the loved ones of those as well. A long time ago, my children still very young began to suffer from the effects of my health. I was still in my twenties when I couldn't really tolerate pressure and constant touching. My children very young, 2,4,6 years old.
They still want momma to hold them and cuddle and play. By the time my youngest was in school, 5 years old I really held my children or played with them and was quick to move them when they climbed upon my lap. I just couldn't handle the pain. Mommy was always saying "I hurt to much right now, that hurts."
The bigger they got, the harder it was. I complained about not being about to do things, was always tired and feeling bad, needed them to understand I just needed their help. Instead they didn't understand why mommy was so angry and fussing all the time. Our relationship dwindled to be far from what I ever dreamed my relationship with my kids would be.
They resented me, I struggled with depression and at times acted out by voicing my frustration for my kids to hear and see. I allowed them to feel as though it was somehow their fault my life was so bad. I didn't realize this was happening and until it was to late never understood my depression was killing my family.
I still don't have any idea how children are supposed to understand this. They are now 12, 14, and 17 years old and have watched their father die, their mother suffer years upon years with mostly no answers or relief. I don't understand, how are my children supposed too? The. To think somehow they are just supposed to take this burden and manage to get through it like nothing has ever happened.
It has torn my family apart and although I work tirelessly to heal that damage, it's going to be a constant battle. A long time commitment and every single day making effort to try and be different. My children are not the only ones to suffer. My siblings, parents and of course romantic relationship and friendships do as well.
My siblings and parents seek to understand with no ability what on earth I'm dealing with and how to help when all they have are words. Words can only go so far and when you know you can't truly take away someone's burden, how else can you help? So they feel they are failing to be supportive even though they are not.
Romantically, life's that much more demanding. I am in need of a great deal of emotional support and at times more physically. The role of housekeeper at times needs to be filled by someone other than me, forget cooking a meal for my partner...that's just not gonna happen if I'm to provide any type of effort in a relationship otherwise.
Then my friends, they feel abandoned and as if I am constantly flaking on them. I become the friend that's easy to stop talking to because I don't feel like going, or talking or doing. Yes I actively participate in my life, but everyday I do so in some form of suffering. Never is it fully and totally present in the moment.
So you think of all the ways that you suffer and never really realize just how much those around you do. They are losing a loved one. Watching you deteriorate before their eyes. Seeing you suffering in silence and depression knowing their words will only fall short. They hurt, they ache, they desire more with you and no idea how to get it within bounds that will be acceptable for you.
This is a whole new side of invisible illness that not many ever speak of. So today I write for those who are suffering along with me even if you have no idea how to help me get through. This disease isn't all about me, it literally is about every person in my life.