You know what happens to the sick, shamed monster you keep in your closet? One day it knocks the door right off the hinges, takes a rattling breath, and tumbles out. This is one of the many reasons why it is so special if you are lucky enough to have friends who will help you through the stages of accepting your disease. It’s even better if you’re able to find friends who have the same struggles as you and can guide you and show you that life with chronic illness doesn’t have to be a lonely road. In my experience, these friendships tend to be built on total shamelessness. In this friendship, I stopped lying, not just to another person, but to myself, and that changed everything.
Good friendships, whatever they look like, can help you in your journey to accept your circumstances and even buffer shame. They can be a buoy of support in times of chaos and a network to help you reach others. They can give you a sense of normalcy and lightheartedness even when you feel unstable. Don’t ever close yourself off to friendships at any stage of your illness. While at some points you’ll have do it alone, people need people to walk through the shadows with. Don’t ever stop looking for a friend. There is somebody out there who needs you as a friend. My mom always says, “If you need a friend, be a friend.”
Chapter 5
Dating and Relationships
If you thought accepting your situation, feeling positive about yourself, communicating with relatives, and making friends was hard, dating and relationships can be even more challenging. Starting relationships with people you intend to share your body with, in all its unexpected malfunctions, can be difficult to wrap your head around. It can be unnerving to create an online dating profile that spells out your inaccessibility, overbearing symptoms, and vulnerabilities.
In this chapter, we’re going to explore dating, long-term relationships, sex, and partners as caregivers. Sex and relationships are not a privilege only for the healthy. People with extreme, advanced diseases still find and celebrate love. All of us are deserving of intimacy and worthy of profound love. Finding a partner who can be there to care of you, comfort you, and remind you of the positive things in life is a risk worth taking. With communication and patience, sex and love can play a crucial part in expanding your quality of life.
Dating with an Illness
Getting out in the dating world and having multiple relationships may be the only way for you to meet your match. While you may be kissing a lot of frogs, you can still protect yourself from the risk of disease and rejection by being open and honest about your disease from the get-go. Dating is a great opportunity to use your handy elevator speech. It will also help you gauge whether your potential new partner can tango with you and all your quirks. It’s better to know this sooner rather than later, so that you don’t find yourself sitting in a bathroom stall during your third date and trying to add an extra layer of cover-up to your surgical scars.
Ten Helpful Guidelines for Dating with an Illness
Use Technology to Bypass First Date Anxiety: Whether you’re creating a profile on a dating site, or you’re chatting up someone on Facebook, make sure to drop the bomb before the first date. If they don’t want to go out with you after learning you have a chronic illness, then that’s that. As my momma says: next! Breaking the news online or even over the phone early on allows your potential date to react in privacy. Since their first reaction may be confusion, giving them their own time to process the information protects them and you. You won’t have to witness them stumbling to come up with a supportive, appropriate, and charming response. It allows them the ability to untangle this information before you meet for your first date, so that when you do meet in person, they’ll have let it settle in their mind a bit and will be able to ask you some appropriate questions about how your disease affects your life.
Don’t Be a Victim: As mentioned in the previous chapter, it’s all about attitude. People are going to follow your lead when it comes to the state of your disease. People can sense your uneasiness about your disease. If you haven’t come to terms with it yet and are still in a phase of mourning your old life, you probably aren’t ready to date anyway, and that’s okay. Give yourself time and space. You’ve got to love yourself first if you’re going to expect someone new in your life to do the same. Lead by example and don’t walk around with a chip on your shoulder that you leave in plain view. I’m not saying you need to hug your fibromyalgia lovingly in your arms every night, but you at least need to be able to get through a flare in public without openly weeping.
Highlight Your Best Assets: You’re going to be as self-conscious as any other person is on a first date, so remember to play up your best assets. Remember to take a good look in the mirror! Maybe you’ve packed on a few prednisone pounds? If so, it’s a great time to pull out that tight skirt to show that you no longer have a flat butt. Maybe you’ve got circles under your eyes? Then you might want to show your date just how sexy you can look in sunglasses.
Don’t Give TMI: The details of your sensitive stomach. The current color of your snot. Your barely-healed laparoscopy scars. Save it for the honeymoon, kids. While you may think your relationship warrants such vulnerability on the second date, you may want to give your love a more extended period of time to bloom before describing some more of the graphic details of your disease. (Though if you must, euphemisms or simply, “I’m not feeling well, believe me you don’t want to know,” should be enough.)
Don’t Lay Down the Law: Yes, you need someone who won’t play games. You need someone who is going to be there for you all the time. You need someone reliable. You need someone understanding. But, slamming your fist down on the table every time you decree a new amendment on how you will be treated as a partner is not going to win you any suitors. If you’re currently dating, try to keep an open mind about your expecta-tions. You can’t tell on a first date whether they’ll be able to live up to your expectations. Take a step back. Remember that relationships are a two-way street and you’ve got to be willing to put out just as much as you need to take in. So why not start off this date making a mental list of how you’re going to improve their life? Partners of those with chronic illnesses are probably the closest things to super heroes. They put up with it all and know they won’t ever get as much physical effort in return.
But that doesn’t mean you can’t put in effort elsewhere. There are millions of things you can do for your partner, like helping them have better relationships with their family and friends, teaching them about having career goals, handling money, and being a solid parenting partner or emotional caregiver. You’re not the only one with problems, so start looking for places where you can apply yourself as the solution.
Don’t Be a Hero: You may have times where you’ll think, “It’s just a little blood…from my eyeballs. I’m good, let’s eat.” Rock climbing? Extreme roller coaster riding? Hot-dog-eating contests? These might not be the best first date activities for you if you have a chronic illness. Pretty much anything on the list in the previous chapter that you wouldn’t do with friends, you may also want to cross off the list for a date. Don’t pretend like you’re cool, and then duck into the restroom for a moment to pass out in peace. No good will come of this.
Remember to Laugh About It: Having a sense of humor when it comes to the wild adventures and unplanned mishaps that occur in daily life with a chronic illness is imperative to successfully coping with stress. When I was younger, and had frequent emergency room visits, my mother would always spend our time in the waiting room and exam room cracking jokes and coming up with creative but harmless ways to prank the doctors. She made sure that I laughed more than I cried. You do have the choice to make every situation a misery or a pleasure. When you constantly find yourself in pain or frustration, a sense of humor is one of the best ways to bolster your spirit and keep a positive attitude.
Don’t Be Afraid of Rejection: If you think you won’t need to be brave after the first date, you’re wrong. Relationships require all kinds of bravery. From braving that first kiss to braving
the first argument. So be brave and remember if someone doesn’t want to be with you, there will be someone else. It’s better to be happy searching for the right one than miserable with the wrong one.
Learn to Adapt and Be Okay with It: Are you going to bail sometimes? Yes. Will you spend three hours on your hair then realize you need a nap? Probably. Is the world going to end? No. Sometimes you’ll want to do something with your significant other and it just won’t work out because your body is fighting back. Sure, the first few times it’s okay to be frustrated and embarrassed, fumble over your apologies, and stress out that they’ll be upset. As my husband, R.J., always says, “we’ll adapt.” Plans change. Even if it might mess with your emotions and make for a less-than-great day, it doesn’t have to make for a less-than-great relationship. Life happens. You’re still allowed to love and be loved.
Don’t Forget That You Can Be Loved: You must always know it. Think it. Act with it in your consciousness as you propel yourself into the life of another person. You’re not just a person who is chronically ill. You are a person, and you happen to also be chronically ill. Don’t let your disease define your personality. You are so much more than an illness. When you stop thinking of yourself in that box, others will too. Your illness will limit a lot of things in your life, but it doesn’t make you any less able to be loved. At the end of the day, dating exists to accomplish two goals: to find someone you like and to have fun. If you’re not doing either, you’re doing it wrong.
Trusting Someone with Your Body
I could not have fathomed the kind of anxiety I would get over French kissing someone I’d only known for six hours. It’s not so sexy when, instead of keeping track of where his hands are, you’re too busy contemplating whether he’s recently been with someone who might have had the flu, or worse, mono. Is he the kind of guy who takes his full course of antibiotics when he gets strep throat? And all that’s long before you start contemplating the mileage of his junk. It’s definitely awkward when in the middle of a steamy embrace you have to whisper, “Are you excited to touch me or are you running a fever? Because if it is a fever, you’ve got to pack it up.” For those with compromised immune systems, you’ll probably have to consider the following questions before getting intimate with someone.
How much do you trust your partner?
Do you trust them enough to tell them the secrets you have about the strength of your body?
Do you trust them enough to realize that their health inevitably will affect your health?
Do you trust them to not share their body with someone else whose diseases could potentially come back to you?
I know it’s kind of a 1950s view on intimacy, but in a world of so much viable birth control it can be too easy to discard the kind of options that protect you from venereal diseases. You are your body’s only advocate, so don’t wait on your partner to offer up information that they might not think is relevant, especially if they don’t know your health status. You need to ask: Are you sick? Do you have anything communicable, even if it’s not affecting your junk? If they say yes, slow down and try to prioritize what is more important: the risk of developing an infection or catching a virus, or the need to connect?
I will be perfectly honest, the need to connect physically with someone often outweighs the consequences of catching a cold. (A cold, not a disease.) And that’s okay. You’re allowed to choose pleasure over the discomfort of minor illness. However, you should consider the reality that whatever happens may have a much larger effect on you than it has on your partner’s life. It could disrupt your ability to go to school or work, or even lead to a greater health crisis. The choice is yours, but you have the right to make an informed choice.
Handling the Early Stages of Romance
So how do you broach the subject of “healthy” boundaries to a date, random hook-up, or friend with benefits? In a word: honesty. What are you going to do, put yourself in mortal peril (or whatever) just to get some? Totally not judging, we’ve all done it. But just so we don’t make it a habit, let’s talk about how to break the ice when it comes to sharing your concerns. Some examples of things you could say:
“So, fun fact: I’m immune deficient and if you’re sick, we could reschedule. I’m feeling really good with you right now, but you’re going to kill me. Well, maybe not kill me, but definitely knock me down for a while if that’s not a bottle of cough syrup in your pants.”
“Look, the fact is that because of my fatigue I have to take naps more often than most people, which means there’s a good chance we’ll end up in bed together.”
“Not that I don’t think it’s really cool that you can walk up a hill very fast, but I don’t think I’m really up to hiking on our date. Maybe we could watch a movie about hiking. I heard 127 Hours is a good one.”
You’re going to be a lot more comfortable and a lot better off in the long term by just communicating. I know there’s something romantic in the mystery of learning about each other, but this isn’t the kind of thing you’ll want to spring on someone three months into a relationship. Is it even realistic to think you could hide this for three months?
You might be worried that once you communicate about your illness, they’ll be turned off, or think it’s weird or TMI. If that’s the case, then they kind of suck, don’t they? Do you really want to be in a relationship with someone who is unsupportive about something like this right off the bat? The possibility of being rejected for our illnesses is a wound that runs deep. After being rejected by family or friends and humiliated by doctors or employers, the very idea of revealing something so personal in such a personal situation can be daunting and extremely unappealing. Let’s talk about a few ways we can push through this uneasiness and open a real dialogue about how disease is handled in functional relationships.
Be Open and Accept the Unexpected Response
When you’ve accepted your disease, you can come at these confrontations with a new kind of confidence. You are not to be ashamed of the extra burden you carry with you every day. Your ability to even be in a dating situation where you get to a point of revealing your disease is a triumph. Be proud of your strength to come clean on the subject and expect your partner to show many responses. This includes curiosity, which is a completely normal reaction and one that they have a right to satisfy by asking questions. The second might be concern. Is this pity for you or worry for themselves about having to cope with this new element of the relationship? Maybe even genuine anguish that you need to deal with these symptoms? All normal. All part of that important discussion you’ll have to have to lay the groundwork for your relationship.
If you cannot lay this foundation of understanding and support, then you are setting yourself up for a relationship full of resentment, doubt, and low self-respect. You deserve a partner who is “in it” with you, and your partner deserves the chance to fully “choose” to be in this relationships with all the facts. Here are some takeaways to help make sure that you and your partner make fully informed decisions about your relationship together.
Going Long-Term. Familiarity, in the world of chronic illness, might not actually breed contempt, especially when it comes to relationships. There are a lot of pros to being in a committed, long-term relationship when you’re already dealing with the tumultuous unpredictability of your body.
Having an Informed, Educated Partner. Being in a long-term relationship means the initial bandage of explaining your illness is over quickly. Though it may take your partner some time to truly understand the impact of your disease on your life, they’re at least aware it exists and you may feel no need to hide it.
Lowered Risk for Disease. Long-term relationships, especially when monogamous, provide a less stressful atmosphere around transmitting disease. If your partner is only having sex with you, you may not have to do as many health checks and have as many uncomfortable conversations before intimacy.
Comfort and Understanding in Times of Distress. While dating may be a sprint, a long-
term relationship is a marathon. If you don’t show up to a first date, it sets a bad impression. However, if you’ve been dating your partner for a long period of time and have to cancel plans, it’s more likely that you’ll feel less guilty knowing there will be more opportunities to be with each other.
Caretaking. Ultimately, your partner may become your caretaker. You’ll have to decide just how far you’d like to extend that part of your relationship, but having a long-term partner can be a substantial help to you during bad days when you need a little extra help.
Boundaries and Caregiving
My mother always said to me, “My proudest accomplishment is getting all that long-term insurance so that you’ll never have to wipe my ass when I’m senile.” I’m sure this is not actually her proudest accomplishment, but it is a giant sigh of relief in the context of what our lives will look like when my mother grows old and needs that kind of help. The thought of my husband ever having to do any kind of general hygienic task beyond helping me brush my teeth is a little mortifying. I’ve set a boundary there and explained that if it were to get to that point I would want outside help. Or if the situation is perhaps serious but temporary, I would prefer to be hospitalized where nurses could help me in a more controlled environment. This isn’t about hiding things from your partner, or about being petty about them seeing you at your worst; it’s about your right to preserve your dignity and set boundaries as far as caregiving. The best way to do this may be to decide ahead of time.
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