What it’s like to be in a relationship with someone who has a chronic illness, or how I learned to stop worrying and love fibromyalgia.
“Where there is love there is life.” – Mahatma Ghandi
Being in a relationship with someone who has a chronic illness is one of the most profound and humbling experiences a human being can go through. You may think I speak of love, or some kind of affection thereabouts but you could not be more incorrect, and I cannot stress enough that while caring for your partner is important it is not the focus of this article. As I write this, Celeste sleeps and I sit at my computer chair with a feeling I am not readily able to describe – perhaps a poet might call it “serene”, not something I was readily able to acheive in my previous relationships or even my single life.
There is a strange sensation one experiences when they learn they cannot have one thing without another. Many people over the years have said in jest they love snow but hate the cold, love chocolate but not the calories and would have children if they could just skip them being teenagers. For me, it was realizing I loved someone who was constantly in pain and would more than likely be so for her entire life and was as simple as shrugging and accepting it.
For Celeste, and indeed anyone who suffers from fibromyalgia or a similar disease, it essentially began to rule her whole life from day one. Think about how many steps you’ve gone up and down this month or even just today, how many times you’ve stretched, you’ve walked to the fridge for a snack or were even able to sit for long periods of time. Now add a near unbearable level of pain to every action and you’ll find yourself much more stationary than you or anyone would really ever want to be. However, the disease takes a different form when in a relationship. More than anyone else, a person who suffers from a disease is acutely aware of how it affects the people around them.
“The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa the bad things don’t necessarily spoil the good things or make them unimportant.” – The Eleventh Doctor
Celeste and I both understand what it means for her to get me a coke from the fridge, much less make dinner. She is also appreciative in a way that is utterly impossible to describe when I care for her, the way she looks at me when I offer to make dinner, get her a blanket or any number of small things that seems like insurmountable obstacles to her. Granted, in a regular relationship this might be expected in some degree, but a ‘thank you’ or a gratifying smile are a pittance to the way she looks at me, like I’m her savior.
She has some measure of trouble with her memory as well, and she trusts me utterly to remember things for her, or remember a certain sequence of events that she can call on me to fill her in on later. That kind of trust is hard to come across these days, and it endears me to her ever more. Someday, hopefully never, Celeste will require even more of me, from putting on clothes to possibly even bathing and I will take to that duty with as much zeal and love as I do every other aspect of our lives.
Conversely, whenever she does something for me it makes it that much more special because we’re both very aware of the effort it took to do it. She is one of the most passionate, hard working, intelligent, beautiful, funny and wonderfully flawed woman I have ever met, and it pains me to know she’s been through such suffering and that it isn’t even over yet.
“When you wake up in the morning, you should look in the mirror and say: FUCK. YOU. Fuck your hopes, fuck your dreams, fuck your plans, fuck everything you thought this life was gonna bring you. Now go out there and try to make them happy.” – Chris Rock
You don’t get five more minutes in bed. You don’t get days off. You don’t get turns. You don’t get breaks. You get to take care of the kids. You get to take care of the animals. You get to make the meals. You get to do their errands as well as yours. Whenever Celeste gasps -for good or ill- it sends me into full alert mode and at a full sprint towards her location, nearly shouting to check if she’s okay, even if I was dead asleep or nearly dead asleep at the time. I don’t think my ass being on fire could achieve the same effect.
Some days, you won’t like them. Some days, you’ll refuse their requests. Some days, you’ll wait on them like a waiter at a restaurant. Some days, their pain will be so bad you’ll only be able to stand there and draw a blank on how to comfort them. Some days you’ll get out of the house just to get out of the house. Some days you’ll find yourself on E-Bay at four in the morning looking at miracle muscle relaxers and pain medication that advertises it works with other pain medication to give your partner five minutes of peace. Some days you’ll demand five more minutes in bed. Some days they’ll take care of you the way you take care of them. And some days, most days, you’ll cope.
In closing, you may take from this that I get some sort of reward for doing mundane tasks for my partner, or that everything I’ve listed of what we do for each other is just a mark of a good relationship, and you may be right. This is just my personal experience, and how I feel. I will say this, though.. Fibromyalgia is a terrible disease to have and I would not wish it upon my worst enemy, but it is in my life because Celeste is in my life and I would take her over any and every “able-bodied” woman out there. It is terrible, yes, but it has brought Celeste and I closer together than I have ever been with anyone before, and for that reason, I thank it.