When Your Caregiver Is Also Your Significant Other
With most couples in a long-term love relationship, whether or not they are married, the phrase “in sickness and in health” conjures up images of short-lived ailments like the flu, or perhaps helping each other in old age after multiple healthy decades together. Not many anticipate or have any guidance as to the challenges that arise when one of you has a significant illness in young adulthood affecting you every single day for the rest of your life. Storybook romances don’t usually have chapters on driving a loved one to appointments, helping them dress, or making sure they have taken their medication. Yet successful relationships in which one is the caregiver for the other are possible when both partners are willing.
The statistics on marriage in the United States are familiar – roughly half of them end in divorce. The rate of breakup is even higher when chronic illness is involved, particularly when there is also permanent financial stress from medical bills and low or no income due to disability. So why do certain relationships defy the odds and flourish despite multiple challenges? I would be lying if I said there was no luck involved, but there is also skill that takes patience and effort to develop. Some of these skills would apply to any long-term relationship, not just the ones in which a partner is sick.
The first skill both you and your significant other need is unconditional love of who you both are RIGHT NOW. If you go into a relationship focused on the notion that your chosen person is a “fixer upper”, you’re apt to be disappointed. It is not reasonable to expect to be able to change a person into your idea of a perfect mate. Both you and your partner will change over the years, but not necessarily in ways we expect and even more rarely in ways we can predict.
Don’t fall into the trap of thinking that no one would ever love you because you are “damaged goods”. No one is perfect, it’s just that some imperfections require more lifestyle adjustments than others. Most of these adjustments are not insurmountable.
Some of us are already ill when we meet our potential partner, and some of us have illness descend upon us after the relationship is already established. I’m not sure either scenario has an advantage over the other. When I met my future husband in 1995, I was perfectly healthy, as I was during the dating, courting and moving in together. It was a few weeks after our 1996 “justice of the peace” style wedding that I developed Sjogren’s syndrome, and the fibromyalgia began before we even got to go on a honeymoon. So our expectations had to change, and quickly. We had to re-think division of labor, financial responsibilities, whether I was going to lose the independence I so prized, etc. The changes, wanted or not, came at us hard and fast so that we could not be proactive but could only react. But despite the unraveling of our plans, we have managed to stay happy with one another.
The second skill which is vital to a successful relationship is mutual respect. Significant others need to know that they are more to you than just a paycheck, a bill payer, a dispenser of medical care or what have you. They are also people with wants, feelings, and limitations of their own. Even if it seems obvious to you that you appreciate their uniqueness, their importance, and all the special things they do for you, it never hurts to say so out loud and/or in writing to them from time to time. Your partner should do the same for you. Any physical or mental limitation you may have due to your illness does not make you any less of a unique, important, special person.
Try to keep your expectations of one another reasonable, and be willing to cut each other some slack on the things that aren’t deal breakers. You may not be able to fulfill traditional roles, and it may work out better for you both in the long run if you focus instead on playing to one another’s strengths and energy levels. It may be frustrating to you that your significant other ends up with double or triple duty when it comes to working outside the home, household chores, errands, etc. but sometimes it is necessary to preserve your health. If you have the finances to hire someone to help out with cooking, cleaning, home health care, etc. seriously consider it. Otherwise, do what your health permits; for instance, if keeping your entire home clean is beyond your capability, maybe just keep up with the dishes, or take on non-labor intensive things like online shopping and bill paying.
You should avoid either being a martyr or attempting to be a super hero. Taking on too much and not telling anyone, expecting them to notice and think you’re noble may backfire. First of all, if your partner doesn’t notice that you’re overdoing it, you may find yourself resentful and your partner won’t even know why. Second of all, pushing beyond pain and exhaustion into a flare doesn’t help either one of you if you end up unable to function at all the next day, or, worse, you land yourself in the hospital. Difficult though it may be, you may have to swallow your pride and let your partner help you, even if you are convinced that the only way to do things right is to do them yourself. You may have to let your standards drop a little, re-prioritize and keep things simple. If you are accustomed to having the carpets vacuumed every day, you may find it’s not the end of the world if it only gets done every other week. Buy more underwear so that you can go longer between loads of laundry. Type up a permanent detailed grocery checklist on the computer, print it out and check off items as you run out of them so you can just hand it to someone else to shop for you. Don’t waste spoons getting upset about things that don’t matter, like how your clothes are folded, and just appreciate that your partner did the laundry. Express your gratitude with a smile, even when your partner is just doing what is expected of them. People are much more motivated to help you out when your response is pleasant. If you are having a good day and are capable of doing a little more than usual, let your partner know. You should also let them know when you are capable of doing less than usual. Don’t keep your significant other in the dark.
Communication is not everyone’s strong suit, but at least a basic level of it is essential. Even when you and your partner seem to be on the same wavelength, don’t expect them to be psychic. Too many arguments consist of one person wondering why the other is angry with them and getting a response along the lines of: “you know what you did”. If you are upset, your partner may have honestly missed something that seems perfectly obvious to you. State your disagreements as civilly as possible, without adding long ago past wrongs into the mix; not only will trying to stay calm save you spoons, it will encourage a reasoned response. If you are too upset to be civil, try saying that you need some time, then write or type up what is troubling you. Leave it for a few hours or even overnight. Re-read what you wrote, and if you still feel this way, give it or read it to your partner. Sometimes the act of sorting things out in a letter vents your frustrations sufficiently so that you don’t need to keep it. Also, your partner might not be able to read your mind about when you would like a hug or have your hand held or just sit quietly for awhile, particularly if you have an illness that causes pain with physical contact. Speak up so there is no doubt.
It is also essential that you and your partner trust each other. Be honest in your intentions and honor them as well as possible. There may be some times when you have promised something and your illness prevents you from following through, but try your best. With proper trust, you don’t have to account for every minute of every day, but neither of you should be keeping important secrets from one another. Not only is it stressful to hide things from your significant other, which saps you of spoons, but also regaining trust once it is broken takes a great deal of time and patience if it occurs at all.
Try not to hold grudges about insignificant things, compiling mental lists of transgressions real or imaginary. Acknowledge frustrations briefly and then move on to something else whenever possible. This does NOT mean you allow yourself to be mistreated. If your partner is doing something that directly harms your health or is dismissive of your role in the relationship, this merits a discussion and perhaps assistance from a third party.
We all have our bad days. You know the ones when your head is pounding, you know you need to eat something but haven’t the energy, you feel like you’re going to explode if you have to be sick one more minute, and you end up yelling at your partner when they haven’t done anything to deserve it? When you mess up, ‘fess up. Let your partner know you are mad at your illness and not them. Sometimes we suffer guilt and fear of being too much of a burden, and we withdraw, leaving our significant other to wonder if it was something they did. Be as clear as you can with your partner.
There is probably a lot going on in your significant other’s head too. They may want desperately to help you feel better, fix what ails you, and when they can’t, this may come out as anger. They can be furious at your illness but not you personally. They may be very worried about you and not know how to express it other than nagging you or being overprotective. Or they may be in denial about your illness.
One of the most common complaints among the chronically ill who are in a relationship is that their partner doesn’t “get it”, meaning they don’t or won’t understand your ailment or ailments. Have you made a reasonable effort to help them understand? Here are some things to try:
1. Print out or provide links to relevant medical articles about your condition. If your partner is the sort who wants a lot of details, a book might be more appropriate. For those who are not comfortable with a lot of jargon, go with something in plain English yet still reputable, like a page from the National Institute of Health.
2. Have your partner go with you to a doctor’s appointment and have them in the exam room with you. Hearing about your illness straight from the doctor might carry more weight than getting it second hand. An added benefit of this is that your significant other can vouch for symptoms you’ve been demonstrating that might not be apparent during the exam, or remind you of something you’ve forgotten to tell the doctor.
3. Have your partner read a description from someone else who also has a chronic illness regarding what it feels like. An excellent example is of course The Spoon Theory. Another is Ricky Buchanan’s “An Open Letter To Those Without Invisible Disability or Chronic Illness” (http://notdoneliving.net/openletter/id).
4. If you know someone who shares your particular ailment, see if they would be willing to talk to your significant other about it.
Be a cheerleader for your significant other, or at least supportive. Listen to them when they’ve had a rotten day at work. Do not bad mouth them in public, especially right in front of them. Give them a hug when they need it. And when you are proud of them, don’t hide it.
One thing that many couples neglect to do once they are living under the same room roof is to go on dates. It doesn’t have to be a fancy dinner and formal entertainment. Just the two of you doing something together that you enjoy. If you have children, see if a neighbor or relative will watch them for a few hours. If you are short on cash, maybe go for a drive on a nice day and have a little picnic in a scenic area. If you are homebound, do something at home once in awhile that you don’t normally do, like order food from a delivery place and putting it on your finest china, or maybe play board games. Use your imagination and have some fun.
Speaking of fun, honing your sense of humor is another useful tool in a relationship. Don’t be afraid to be silly at times. Sing loudly to your favorite songs and maybe make up a dance to go with it. Laughter releases healing endorphins, and it can help diffuse the ongoing stress of chronic illness and all the usual baggage that goes along with it. Watch funny movies or TV shows. See who can make the worst pun about something. Share a joke you heard recently. And, yes, it is okay to laugh at yourself sometimes. A sense of humor makes the hard times a lot more tolerable.
This may sound counterproductive, but as much as you rely on your significant other and need to spend some special time with them, you also need an emotional outlet outside your primary relationship, a friend or family member in whom you can confide from time to time. It could be a monthly phone call to a parent, instant messaging with a college buddy, a worship group or a friend who has a hobby in common with you. For instance, I occasionally go to lunch with members of my water therapy class. Your life will feel more balanced if you are able to connect with others periodically.
In order to be fair, your significant other will also need to stay in touch with friends or family other than you from time to time. They may want to do something that you can no longer do, like a sport. It may hurt that you cannot be included in certain things, but try to be supportive if it helps your partner recharge their batteries, especially if it is a healthy activity. If your partner is going somewhere that you cannot, they should give you a general idea of where they will be and roughly when they expect to return. But if your significant other is spending more time with friends than with you, making dangerous choices like driving drunk, or lying to you, it is time to re-evaluate these decisions.
One subject rarely addressed regarding long-term relationships in which one partner has a chronic illness is physical intimacy, or rather, the lack of it. It can be a challenge to feel romantic with someone who may have had to help you with such unglamorous things as using the restroom. In addition, some ailments cause lack of libido, pain with intercourse, or other types of sexual dysfunction. Tell your physician about any trouble you are having as there may be a medical solution. Also, it is vital that you be honest with your partner so that they don’t think they are the cause. Reassure your significant other when you still find them attractive but your illness makes sexual activity difficult or impossible. Perhaps the two of you can come up with creative ideas, including non-sexual ones. If you are still able to show your affection through hand holding, hugs, kisses, etc. continue to do so. Flirt and have sexy conversations. Cuddle on the couch or curl up together in bed so you still get to experience the physical proximity of being with the one you love.
Nearly every person with chronic illness and nearly every relationship will experience dark times. There are many online and in person support groups available for the chronically ill. Your partner may benefit from a group especially for caregivers. But if you and/or your mate find yourselves angry, depressed or anxious continuously for a period of more than a few weeks, seek professional help. Psychiatrists treat serious conditions and can prescribe medications if necessary. If you just want to be able to talk with someone to sort things out, you can try a social worker, licensed clinical psychologist, or a spiritual advisor. You can go by yourself or with your partner, whatever the situation warrants. Just keep in mind that seeking counseling does NOT mean you have failed. In fact, it is a sign of strength that you care enough to work out whatever bumps you may have in your path.
One more suggestion: there is an excellent book with an entire section on illness and relationships entitled “Life Disrupted” by Laurie Edwards. In it, she details how she met her husband, dealing with guilt, meltdown moments, teaching your significant other about your illness, being vulnerable, marriage, and caring for the caregiver. The knowledge imparted from someone who has been there and is doing that with humor and eloquence is invaluable. Track it down and read it.
It is tempting to be jealous of adorable couples who don’t seem to have a care in the world. But with couples who have never faced any life challenges there is no way of knowing how they’ll hold up once a crisis arrives. And couples who seem to have it all may not appreciate it and may still be miserable. The chronically ill and their partners may find their relationship is stronger because they have been tested early on and have had to develop a survivor’s mentality. Also, they are less likely to get distracted by frivolous things. When both you and your significant other are dedicated to making your relationship work without using up too many of your spoons, you are way ahead of the statistics.
Article written by staff writer, Karen Brauer
Karen Brauer is a happily married woman in her forties living in a little house on the prairie. Her passions include: photography; classic and some modern literature; classic, foreign and some modern film; and music of all kinds. Her blog is called “browser life”: http://browserlife.blogspot.com/