So I have heard from a lot of people that they don’t know how to explain this to their families. That their family members see them as whiny, attention seeking, or just plain lazy. I understand how that can happen. Autoimmune diseases are invisible. We don’t look sick. And most of us never will. We look exhausted-a lot! But not really sick.
The thing is, pain is tiring. If you read about it, there is research that states going through a day of pain is like going through a day of mild exercise. Muscles contract to compensate for a painful area we may be babying, breathing is increased, and heart rate and BP are elevated. It’s hard work to exist in pain. But our face rarely changes throughout our pain. Unless we contort our face in some way, it looks normal. Our skin doesn’t change color in and our face itself rarely swells up when it is our muscles and joints that hurt. So we are like those old candies called ‘Gushers’. They looked like normal everyday starburst chews on the outside, but when you bit into them, boy did that liquid center come pouring out! We look fine on the outside too. We just don’t let our pain come pouring out. Usually.
So what do our family members see? We sit on the couch at get togethers instead of offering to help because we are afraid to drop the plates of food or the piles of dishes after the meal because our hands are weak and they hurt? Or we sit at the table being quiet because talking takes too much energy. Or they assume we are the snobs because phone calls are difficult. Literally! Talking on the phone dries me out, hurts my wrist, and is mentally draining. But who on earth can understand that unless they feel the same way I do?
And then there is the whole house cleaning issue. I can’t clean. I used to. I could get down on my knees and scrub the tubs and showers and only pay with swollen painful hands. Laundry wasn’t too bad even if folding caused sore wrists. I cooked a lot. I was acting normal. I was doing the work but I was also napping a lot. Which was accepted by my family.
But as things got worse, chores got harder for me to do and I abandoned them. It’s not easy getting others in a household to just pick up extra work that they are not used to doing. Asking my pre-teen kids to take on extra work seems like a no brainer, but it’s far from easy. They don’t understand why I need the help now when I didn’t before. And the asking is sporadic because the disease is inconsistent.
So we live in a world of ‘why can’t you do it?’. And it becomes easier to just do it even though it completely ruins us. Vacuuming and dusting one room yesterday has created a situation where walking is a pipe dream today. But there is still so much to do. So I have learned to deal with a messy house. I have learned to accept complete embarrassment if people stop by. And I have had to accept that I must explain myself to everyone who comes in to my mess even though no one has the right to judge us for our abilities or lack there of.
But family is still different. My husband hates a cluttered house. My youngest doesn’t like having his friends over when the house a mess. My own mother cannot accept that things just will not get done in my house even though I have a husband and two grown children. And it stresses her out completely. She sees this fact as proof my family does not take care of me. She could not be more wrong. My husband and my kids do what I need when I need it. It’s just that what I need is not a pristine house though that would be nice.
My needs are more immediate. I need help walking. I need help getting up and down the stairs. I need my medicine and water when I am forgetful. I need muscles when I can clean the house. I need someone with me now when I cook. I need the caring of someone to say ‘don’t worry about that’ even if they don’t do it themselves right then.
But most of all, I need one thing that I have yet to get: unconditional acceptance of my disease process on any given day. Whether I am a dynamo and can do everything I used to or whether I am a silent lump under my favorite furry blankets. That is what I need from my family. Maybe someday they will be able to read enough to truly understand the reality that is life inside my body. For now, I will continue to write.