I started a line of thought in my most recent post that warrants its own entry: the reason no illness is ever truly invisible is because the people who love us can decipher the many signs and symptoms of illness no one else can. I think it’s important to explore what it’s like for our partners or spouses when a shared illness is invisible, because it isn’t easy. It isn’t fun, or glamorous, or fleeting.
And it certainly isn’t fair.
I mentioned previously that my husband can tell from the single word “hello” if I am having a bad day. The reason he is so attuned to me is because he has spent our entire relationship doing things for me and because of me that no one ever sees:
Performing my chest PT when I need an extra treatment. Racing to hook up my nebulizer when I can’t get it myself. Picking up my prescriptions and accompanying me to doctor appointments when I am too weak to get there on my own. Eating outlandish food that does not contain wheat, poring over recipe books to make my limited diet more interesting. Wiping my forward when I am clammy, holding my hand when I have palpitations. Taking me to the ER and spending nights wide awake next to my hospital bed. Rubbing my back when I cannot stop coughing and knowing when to thrust the spit cup under my mouth. Staying nonplussed when steroids make me moody and unpredictable, carrying things for me and doing all the shopping and housework and lugging when I cannot help him at all. Understanding when we have to cancel long-awaited plans, miss outings and trips, or have to leave early because I am not feeling well.
(Loving me when I am at my lowest, loving me when I cannot recognize myself.)
And these are just the physical things, the actions and reactions precipitated by symptoms and medications and infections. I cannot leave out all the other realities of his life with me: The enormous medical expenses that will never go away. The financial ramifications of the career choices I have made in the interest of my health. The fact that in some ways, we are limited by my illnesses in ways that have nothing to do with stamina, oxygen stats, or infection rates. The fact that no matter what, progressive diseases mean things will never be uncomplicated and there will always be nagging fear.
“You’re sure you know what you’re getting into, right?” I asked him during our engagement, only half-kidding. But the man who was not scared by IV bruises the night we met, who did not mind spending part of our honeymoon scouting out a Walgreens and playing Scrabble while I used my neb, does not seem daunted.
(He’s crazy, I think to myself. And I’m lucky.)
Acquaintances are surprised if they find out I am sick, and friends who do know often do not realize it is in any way life-defining. This is because I look healthy when we split bottles of wine and pore over appetizers; this is because they do not see me on any sort of day other than a good one (and lucky for both of us, there are so many more good days than there used to be). So aside from my immediate family, I do not think many people realize the cost of invisible illness for him, for anyone who chooses to spend their lives with people who will have good days but will never be healthy.
I do not think my husband spends much time thinking about this, or wishing people understood the pressure and responsibility of illness. But from my perspective, I think it would be hard for anyone in his position. Because for as many people there are who ask me how I am doing and how I am feeling, far fewer stop to ask him how he’s doing with all of this, how he’s feeling. I am the patient, so I am afforded the empathy and the queries.
And so in the background stands the person most responsible for all the days when I can safely tuck my illness away underneath invisibility, and no matter what I can hide from outside eyes, it will always be visible to him.
(Even when I wish it wasn’t.)
Individual symptoms and diseases are less important than the fact that whatever is wrong with someone directly influences the people in his or her life. With that in mind, and all the other healthy people involved in relationships with patients of any chronic illness, I want to point out that the Well Spouse Association’s 19th Annual Conference is happening this October. For more information, click here.
Good post Laurie. I like knowing more about you and what is really going on. John is a rock star. You are too.
Fabulous post.
I am also lucky to have a crazy husband.
Although chronic illness can put tremendous strain on a marriage I like to think it has built an even stronger bond between me and my husband.
Even though there is fear, sacrifice and struggle – we are left in doubt of our love and devotion to each other.
Whenever I shake my head and think “how can he love me when I am like this?” I have to remind myself that I do him a disservice in thinking so little of him and his prospensity to love and care for me, and to help me to be the best I can whatever the circumstances.
And I remind myself that if the roles were reversed I would be there for him fully and wholly (though perhaps not with quite as much grace or charm!).
Beautifully written. You are lucky to have each other.
Interesting reading, Laurie.
My late husband had bronchiectasis and (as you point out), tho’ his disease might have been invisible to others (at least until he was on O2 24/7), it wasn’t to me – and actually I know I helped him keep it invisible to others (I guess that is “help”, but sometimes looking back now I wonder about that….)
Nice of you to give your husband’s role public recognition. And thanks for the link to Well Spouse Org which helped keep me sane and my marriage sound and mutually loving. (I will never forget his last look of unconditional love)
Laurie:
Thanks for this very perceptive post. You and your husband are very lucky that you have such a close relationship. I know whereof you speak, it was like that with my late first wife, I could tell when she was feeling “off,” and I became like her second thought — confirming voice to remind her that it’s OK to take it easy, and rest when the illness was doing its thing. Even now, with my second wife having had a small stroke this year, I recognize the more subtle, emotional results, which no-one else does — but alas, it’s not possible to do much about them, except to give her confirmation! The Well Spouse Association has been a tremendous help for me in this respect, to be able to take breaks myself, in order to be a better caregiver.
I meant to add… kudos to John, your husband, for everything he does!
This is an amazing post Laurie, and it’s completely true. Nobody ever asks those close to us how they are doing with all of it. Your husband sounds amazing, you are lucky to have him. I hope my husband is half as crazy!
What a great tribute to John! You are a lucky wife, just as he’s lucky to have you.
I often wonder about my future, if I could ever find anybody who’ll be able to see past all of my health issues and still be accepting of me. Who could love me. (And I don’t mean my parents.)
It’s so nice to hear of couples that are making it work.
Wow. You really put into words a lot of what I’ve been feeling. I’m very lucky to have a supportive husband who does virtually everything — childcare, housework, cooking, yardwork. Everything. I feel so blessed, even while adjusting to what we fear is something that won’t go away. (I’m still awaiting definite diagnosis. Lots of tests, etc. Few answers, other than it’s an autoimmune disease.)
A good marriage is a wonderful thing and, sadly, so rare. I’m glad you have one, and that you’re both able to appreciate each other.
Your hubby sounds awesome! Give him a big (((HUG))) from me. It’s great to hear about those of us who found love when we were sick.
My hubby inherited my sicknesses – poor guy, but he’s sticking with me and that makes me love him even more.
I’m just a random visitor, pointed to this post by the “grand rounds” over at Kevin MD (I think).
Just wanted to let you know that I came close to shedding a tear reading this, and not from sadness.
Your words rang through clear and true, and I wish the best for you both.
-EEJ
Wonderful blog.