Life was good. Until my heart decided to go haywire. Suddenly, I was living with a “health condition,” or what some cardiologists refer to as a “critical congenital heart disease.” I was sick. And I wasn’t going to get better. Life, as I knew it, was over. I quickly realized that unless I wanted to spend the rest of my life hiding in the corner of my room, crying, I’d better learn to adapt to my new situation. It’s taken a lot of work, but after meeting a ton of other people like me, here’s what I learned on my journey to acceptance.
1. It is what it is.
Biggest lesson ever: It is what it is. There’s nothing we can do to change the situation, so we might as well accept it and move on. This doesn’t mean we ignore it or even like it. It simply means we choose not to curl up in little balls and cry, nor do we spend hours stressing over it or the outcomes. We’ve realized that’s wasted time and energy that can be used elsewhere. Like on baking chocolate brownies.
2. We’re not faking.
Some days, we feel like crap for no reason. We woke up feeling that way. Or we did laundry, which made us feel awful. Or we took meds, which made us sick. There’s no rhyme or reason why we feel sick, we just do. Hopefully, time, fresh air, a good book, a little nap, or some different medications to counter the first medications will help. Something. Anything. It’s a toss-up and every day is different. Just when you think you’ve figured out our symptoms, or when you believe you know what will help, everything’s probably changed again. Sorry.
3. We don’t like being sick.
It may seem like we enjoy the attention or we’re seeking it, or we conveniently get sick at just the right time, but that’s not the case. We know we were fine a few minutes ago, which makes it very suspicious that we’re all of a sudden deathly ill. Since you’re not inside our bodies, we’re certain it’s difficult to understand. It is for us as well. Sometimes anxiety exacerbates our symptoms, which may make it look like we’re trying to get out of things, but that’s not the case. Please believe us. (By the way, you’ll see this a lot with kids with chronic illnesses. They don’t try to be sick to get out of school or things they don’t want to do, though it may appear that way. Please believe and understand them.)
4. Having a health problem isn’t the same as being sick with a cold or flu.
Being sick sucks no matter what. When you have a bad cold or flu, we feel bad for you. We do. But our chronic illness isn’t the same. We’re not trying to one-up you, we’re just saying our situation isn’t something that will go away in a few days. It’s also not something a nice, warm cup of tea and some Ibuprofen will take care of. We can’t down a shot of NyQuil and be done with it. We need about five meds in the morning just to survive. Thank you for your suggestions, but we’ve probably tried everything. Even the natural stuff.
5. The excuse, “I can’t because I have a doctor’s appointment,” isn’t an excuse.
It’s true. We always have doctor appointments. We’ve had to schedule and reschedule babysitters, change work schedules, rearrange the kids’ sports activities, cancel social plans (what social plans??), and even been laid off from jobs because of the obscene amount of medical appointments, procedures, and surgeries. We’re not complaining. We know we’re lucky to have such good medical care, but it gets old after a while. We’re sure it gets old hearing it, too. “Oh, another doctor appointment? Shocker.”
6. The pharmacy is our second home.
Most people call Starbucks or something cool their second homes. We spend so much time at CVS getting our prescriptions, we figure, “What the hell,” and so we pick up some milk and laundry detergent and bread while we’re there. We spend hundreds of dollars a month for medications, why not add a few things to the bill? Especially chocolate. Lots and lots of chocolate.
7. We might as well be nurses and pharmacists.
All we do is research and read research articles and talk to nurses, physicians, and pharmacists. And then we research some more. We’ve spent years learning about medications and treatments and what does/doesn’t work. We seem to know so much that even you come to us for advice. Yep. We’ve probably considered a change in careers (at least, many of the moms probably have).
8. We always know what to pack for the day.
We’re the ones with the Band Aids, the Tylenol, the Motrin, the baby aspirin, the tweezers, the nausea medicine, the motion sickness medicine, the gauze bandages, the wraps, the emergency blankets, the emesis basin, the tourniquet, the antibiotic ointment, the latex gloves, the antiseptics, the defibrillator, the….God, who knows. Trust us. We have everything anyone needs for an emergency. You’re welcome.
9. You can’t see our illness.
Unless we’re topless or in a bikini. Yeah, good luck with that. A lot of people have health conditions or chronic conditions that can’t been seen on the outside. For example, my heart is sick. You wouldn’t know unless you saw me walking up a flight of stairs, huffing and puffing. You’d probably think, “Wow, she looks kind of young to be so out of shape.” I’d have to take off my top to show you all my scars from all my recent surgeries for you to know something was wrong. That’s the difficult thing about my illness. Same with my kids. My daughter has only half a working heart. Sometimes we park in a disabled parking spot, either for her or me. People stare, wondering why on earth we have the blue placard hanging from our rearview mirror.
10. Our bodies change.
Having a health condition or chronic illness means accepting our bodies for whatever they decide to do or be—no matter what we do or don’t do. I used to be a freaking triathlete. I ran marathons. I rode in 100-mile bike races. I surfed. I danced ballet. I was phenomenally fit. I rocked a bikini. And now I don’t do any of the above. I can’t speak for men, but as a woman, this is horrible. Blame it on society. Blame it on the media. Maybe it’s my own fault. I have to work really hard to remember “it is what it is” when it comes to my physical appearance. My body changes all the time. Five pounds up, eight pounds down. Some days strong, some days weak. I can only go with the flow my health decides.
11. Having a health/chronic condition forced us to reevaluate our finances.
The Prada bag, Miu Miu sandals, iPhone, Sushi dinners, yoga classes, and those darn Caramel Frappuccino® Blended Coffees topped with extra whip and more caramel sauce go out the door. We’re now too busy paying co-pays, out-of-network fees, things that aren’t covered, and prescription costs, in addition to covering missed days at work or non-existent paychecks to pay for any extras. We learned long ago to sayonara the fun stuff — movies and dinners and manicures and shopping days. The good news is it forced us to be more creative and adventurous when it comes to fun. The not-so-great news is sometimes our friends and/or our kids’ friends aren’t as excited about freebie fun, so we often have to say, “No, thanks,” to their invitations to activities that cost money.
12. It makes us question who we are and who we’re capable of being.
We have to work hard not to limit ourselves. “It is what it is” must be used correctly so as to accept reality, but not limit ourselves. We must remember we’re still us, we’re still capable of success, we’re talented and have a lot to offer this world. No matter how shitty we feel.
13. We work hard to show our children we’re doing OK.
Sometimes, our health condition scares us. Once in a while, we worry about the future. We hate to think about finances. I don’t lie to our kids, but I don’t want them to be afraid either. I want them to be strong because they, too, have health issues they will never be rid of. They will have to grow up with heart conditions. They will have to overcome and live “normal” lives. How can they do that if they see their mother falling apart on a daily basis? They won’t. So I don’t. They know what’s up and they also know “It is what it is,” and they’re able to rise above.
14. There are upsides.
That sounds like a crock. But honestly, there are some good things that come of having a chronic health condition. We’ve learned to change our perspectives about a great deal of things. It’s simple with practice.
15. Priorities change. For the better.
Since I’ve gotten sick, I’ve learned to realign my priorities. I don’t sweat the small stuff anymore. Surprisingly, my stress levels have decreased dramatically. My house doesn’t have to be spotless. I don’t have to be the faultless wife and mom, who looks 14 years younger than I am. I don’t feel the need to have perfect children who get the best grades, who do every sport and are involved in every activity. Having health conditions frees all of us from such pressures. We do the best we can do in whatever we choose to do and are a hell of a lot happier. While I’d never hope for a chronic health condition, I’m stuck with one. It is what it is. I can only learn to live with it and make my life the best it can be. Featured photo credit: Amy Kellogg via flickr.com
