This post has been a long time in coming. The last thing I blogged about was Hananiah’s birth 20 months ago. Twenty months. That’s how long I have felt as if my head was being held under water, struggling to the surface for a breath of air only to be shoved back down into the depths again. Twenty months.

I have not been the same since my sweet baby girl was born. I never recovered from her birth. My body has been carrying a burden laced with different labels. At first it was hypothyroidism. Then chronic fatigue. Then fibromyalgia. Then adrenal fatigue. Next came POTS. Then finally, a chronic Epstein-Barr Infection which, more than likely, is the root cause for all of the above.

Regardless of what it’s called, I’ve been wrestling with a chronic, “invisible” illness. They call them invisible illnesses because those suffering do not look sick. The people who pass by me in the grocery store have no idea that being in that store is such a big deal and fills me with such panic. They might think it’s strange that I pump my legs up and down to try and get the blood flowing to my brain. If they cast a second glance (which they just might since my cart is so full from shopping for a family of nine) they might notice that I look tired. They don’t know about the time I nearly passed out at a different grocery store. They don’t understand that standing in line for me is more than a minor annoyance. It’s potentially dangerous. They don’t realize that this grocery trip might just leave me bedridden the entire next day because it costs me so much energy. They might see me parking in a handicapped spot and think “She doesn’t look handicapped.” More than likely, though, they don’t see me at all because they have their own lives, their own thoughts, and this is just one stop in their normal day.

I’ve noticed how people don’t see me when I really need to be seen. Some people do. some people stop and help. Most don’t.

When you are sick for a few days or a few weeks, people seem to care. People seem to want to help. The longer you are sick, the fewer offers for help you receive. People check up on you less, and when they do they really just want to hear that you’re feeling better. No one wants to hear you complain. Negativity is to be avoided. It’s even labeled “toxic” and we are told to stay away from toxic people who bring you down. So, you must find the silver lining no matter how much you hurt if you don’t want to be alone at the end of the day. You learn to not talk about it, to deflect half-hearted questions with trite, incomplete answers. You learn that not many people really understand and most people don’t really want to. So, you tell them what they want to hear. When you are honest, you hear crickets. It’s awkward. You feel even more alone if that’s possible.

I recently re-read Job. I have never liked reading Job. The beginning and the end are great, but I have always wanted to skip through the middle. Only this time, I cried through the middle. I felt, like a dagger, every cruel word and every thoughtless remark made by Job’s good buddies, the only people he had who didn’t leave him high and dry. I felt Job’s pain and empathized with his journey. He went through a journey. It wasn’t pretty and he was pretty darn negative most of the time. I wonder if, at the end, when everything was restored and his friends came and comforted him… Did he have the thought of “Where in the world have you guys been?” What, they only wanted to be his friend when he was well and whole? Was there hurt and bitterness there? Of course, Job had just encountered God, so maybe not. Maybe all that was broken was put together from that wirlwind. Maybe I just haven’t had my whirlwind experience yet.

This is what it’s like. I don’t want sympathy or pity. I don’t want someone to find a Bible verse or Christian cliche to smooth everything over. I don’t want someone to compare what I’m going through with something worse in an effort to make me feel better or slap me into gratefulness for what I do have. It is possible to be grateful and hurting at the same time. I don’t want someone’s health advice unless they actually know what they are talking about, which would require really, really listening to what is going on. I don’t want anyone to sell me anything. Or even tell me much of anything if they haven’t sat down with me in the dust for awhile. Sometimes the best response is “That’s hard. I’m praying for you.” Even better would be the addendum of “Let me do a load of laundry for you,” or something like that. But please don’t treat me like a leper, and let me contribute when I can.

I want to be productive. I want to be a giver, not a taker. Somedays I end up in tears because simple tasks like changing a diaper and putting my babies to bed feel next to impossible. Somedays I look up the steps and think “There’s no way I can do this.” And yet, I manage to do it time and time again. Because laying down and giving up is not an option. And then, for a day or a week I manage to find the surface. My head comes up out of the  water and I breathe in deep. I feel normal. I can do normal things. I feel hope. Maybe this is over. Maybe it was all just a bad  dream, a bad behind-me dream. Can I  announce this ? That I’m normal again and people can stop avoiding me? I’m healed and whole and who wants to meet  at the park for a playdate? Look! I’m better. I’m who you want me to be! Until I pass out again or succomb to the depths of fatigue.

This is what it’s like. Just in case you were wondering.

 

 

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