Being chronically ill comes with a lot of inconvenience, a lot of canceled plans and modifying daily life. This of course is on top of the host of different symptoms we experience. Our family and friends get to experience this from a second hand perspective, but they don’t actually live through it.
They can and do however, worry. In fact from my experience, I think they worry more in their position than we do. After all we are their loved ones and we have something wrong with us that they don’t quite understand it.
Because no one can quite understand what someone else is going through, it can leave a lot to the imagination and lets face it, we tend to usually assume the worst. When someone is running late, we worry it’s a car accident, when our boss calls us into their office we worry we’re fired, when our spouse gives us the dreaded “we need to talk” we worry they might leave us. It’s a rather natural reaction.
It’s not any different when we tell someone we love that we are sick. Not just “cough cough” sick but really sick, chronically ill in fact. We have something that may/will be with us forever and in all likelihood will get worse over time. That’s a lot to handle (well…. when they actually believe you….. but that’s a post for another time). Someone they love is sick, hurting and won’t be getting better.
I mentioned in a previous post that I had told my dad about my lupus diagnosis late last week and that while he knew what I was talking about vaguely, he didn’t seem to respond very seriously, it was almost an “are you sure?” No different than if I would have just told him my back was hurting, I had the flu or I was over tired from a night out. I wasn’t super offended, after all I remember as a kid how he responded to illness and pain. Very much so the “if I can’t see it, it isn’t there.” I really didn’t expect now to be any different, after all without the rash, lupus is a rather invisible illness.
I have to say, I was was wrong to judge so quickly.
A couple weeks ago I had invited my dad out to visit us this Monday since ALL of us had the day off. This is actually rather a rare occurrence, since my dad is a pastor he is very busy with work on the weekends and the older two kids and Mr. Mango are busy with work and school all week. It never usually works out for us all to spend time together apart from big family get-togethers at Christmas or maybe the kids birthdays.
When he got here today, I could see it on his face. SOMEONE had been doing some google-ing…..
Now I don’t know about anyone else, but when I would google my symptoms and/or specific disorder I generally hit all those super popular sites first (WebMD, medicinenet, mayoclinic, etc) and while I would nod my head at the list of symptoms, prepare for your appointments and such, I would freeze up at the dreaded “complications” page. What does the internet have to say about those complications? Those worst case scenarios? Those….. end games.
While my dad was aware of my IBS, migraines and anxiety disorder in the past, they weren’t a real concern. Not that they don’t effect my life, but that they simply require treatment, lifestyle changes and a little understanding. To a bystander, they aren’t that serious, life-altering or life-threatening.
Maybe he just never googled ‘those’ before. I have no idea. I can’t assume. What I do know is that now something has changed. HE IS WORRIED. I don’t recall ever seeing him this worried. Maybe when my water broke 8 weeks early with Little Dude, because HE KNEW that it was serious and could end in many life altering complications. Not unlike many chronic illnesses, like lupus.
We didn’t talk about it much. I think we both silently understood that we’ve been researching, reading and contemplating a lot of information the last week and that the last thing we needed to ruin our ‘family day’ with was talk about kidneys, protein in the pee and heart disease. We played some family card games, we talked about music (a must in our family) and we laughed about how silly the kids are.
He watched as I relieved a cramp in my hands. He watched as I took a break to take my meds. He watched as I very carefully knelt down to kiss Princess’ knee after a tumble.
He watched me. He worried for me.
It really hit me, they will worry. My loved ones. They will google lupus, they will find all those worse case scenarios and in the end they will worry about those worst case scenarios. It’s just what you do when you care about someone.
While our family might be worse than others due to our more recent experience with a loss from an invisible illness, I’m still guessing we’re not the only ones.
We may be the one’s who are ill, we may be the one’s who are suffering.
Our loved ones will be the ones confused and unfortunately a little in the dark. They will be the ones worrying.