© Karyn Moran Holton
If there's one thing that I can think of that would be worse than having to deal with lupus, it would have to be watching my husband deal with it. Don't get me wrong -- he's an amazingly strong individual, mentally, physically and spiritually. He is probably more "qualified" than I am to deal with the physical symptoms, the mental stress and the self-doubt that accompanies any chronic illness.
But I would give up half my soul if I thought it would help him avoid it entirely.
I've said this before, but it bears repeating: It's difficult enough to be ill yourself, but it's immeasurably harder to watch a loved one battle an illness. I can only imagine how it feels to stand helplessly by while someone you love suffers through severe fatigue, crippling joint pain, sleepless nights, and mouth sores that leave them unable to eat. To spend endless nights in the hospital, just watching them breathe. To grit your teeth in pain (real and sympathetic) as your loved one grips your hand like a vise because the nurses have to make a fifth attempt at starting an IV.
It takes incredible character, strength, selflessness and an endless capacity for love to manage these things. How else (aside from Divine Intervention and Celestial Visitors) can you explain someone who loves a lupie? Talk about high maintenance? Lupies really win the prize in that category! Ivana Trump is easier to take care of!
Think about it: Lupus patients can be incredibly selfish. We are needy, demanding, short-tempered and cranky. We don't get enough sleep, we're in pain all the time and we have no patience for other people's problems. We can be whiny, self-centered, insensitive and distant. We lose our hair, get deforming facial rashes, gain weight from steroids, swell up from water retention and kidney failure and get nasal sores. When we're not burning up with fever, we have icy cold hands and feet from circulatory problems. (Makes you just want to cuddle right up with us, doesn't it?)
We need constant reassurance and affirmation, because we're always having some sort of emotional crisis. We feel useless because we can't work. We're tired of juggling meds, having tests and seeing doctors without any change in our symptoms. We feel ugly and unlovable because of physical symptoms, medication side effects or "just because"! We feel irresponsible because we have children and grandchildren that we can't play with or participate in activities with. We get angry because of our limitations. We become incensed because no one understands us and that @#$% neighbor made another insensitive remark about lazy housewives and we know that she was talking about us!
High maintenance, indeed.
For these and a million billion other reasons, I have to salute the unsung heroes of lupus: The spouses and significant others of lupus patients.
These are the people who tolerate our angry tirades against the world without judging us or labeling us as completely deranged. They sit endlessly in waiting rooms of doctors' offices, labs and hospital ERs. They hold us when we sob into our pillows with pain. They cook our favourite meals to coax us to eat. They drive countless miles because we can't. They work two (and sometimes three) jobs because we can't. They go to the softball games with the kids because we can't. And they do it all with heads high, uncomplaining and utterly selfless...because we can't.
These Angels-on-Earth do all this without benefit of doctors, medications or national organizations. They don't seek sympathy, and they don't make a habit of kvetching and complaining. They are mother and father to children, spokesperson to family and friends, patient advocate to healthcare personnel and unwavering light in the darkness to thousands of us.
While this article cannot make up for, pay back or even address the untold sacrifices of the lupus spouse, it can let you realize that we are aware of you. We recognize you. We know what you do every day (if not exactly why).
...And we are in utter awe.