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/

 

 

 

©2010 butyoudontlooksick.com
  • Gail Nash

    hi- thanks for writing this article. I’m hoping my ‘significant other’ will read it, too, because he’s been taking care of things for a few years now as i’ve tried to adjust to the limitations that my chronic illness brings. I didn’t “look sick enough” to the SSI judge last year and 10 months after the last appeal, i was denied again and have to reapply. So for 2 years, my partner has been paying the bills, doing the heavy lifting and more of the general chores. He even took care of my daughter when she had to move back for a few months. I have asked him repeatedly how he feels about it and he’s said that it’s fine, we’ll do ok. Then suddenly this week (after months where his patience has been nil), he’s said, in a non-committal way, that he’s not interested in being caretaker into the future. Besides feeling really depressed that love is NOT enough, i’m starting to panic about starting over. At 60 w/post-polio syndrome which includes fibromyalgia and chronic fatigue, and a serious debilitating back problem, i can’t get a job. I worked for 40 years but couldn’t get SSD. I’m picturing being on the street, having to sell the house, or (blank) nothing. I have no back-up plan whatsoever. He’s only 50 and that’s never mattered until now. I’ve always tried to be as loving as i could be, i’m a hyper-vigilant person and watch his moods but i’m also a hard headed woman, and after being depressed and worried, i’m angry. AT the illnesses, AT the guy, AT myself for not knowing what to do. The one thing keeping me from becoming the funny little cat-lady on the street here, is him. He’s given me not only financial support these past few years, but emotional support because i don’t see people often, and physical support sometimes. I hope MEM got thru’ her situation ok. And now i hope i do, too.

  • Alan W

    I am so glad to find articles like this. I am the caregiver for my 36 year-old fiancee, who has Pulmonary Hypertension. So much of what is written here is invaluable.

  • http://followhimfaithfully.blogspot.com Valerie

    I am delighted that I found this website. A friend told me to read the Spoon Theory just today. Incredible stuff here! My husband has been disabled for several years due to a genetic disorder and we have struggled through countless challenges along the way. Learning to accept the limitations, the role reversals, the financial stress, coping with caregiver syndrome have been very real. (Both our daughters have had major hospitalizations as they, too, suffer like their Dad. Plus, I had the role of care giver during my father in law’s last year and during my mother in law’s battle with Alzheimer’s. So I’ve had to care for everyone at one time or another!) There is so little information for couples coping with a chronic illness. I recently heard that 75% of couples living with a chronic illness or disability will call it quits. That is so sad. Thank you for this great article.

  • Vincenzo

    I have been a loving husband and caregiver for over 14 years to my beautiful loving wife Rosie. I know that an illness can be stressful but compassion, commitment and communication has been the anchor and strength of our relationship. I truly do not understand a spouse who walks away especially when the other partner needs you the most. Despite all challenges and obstacles thrown our way I look forward to many years walking side by side with my partner and best friend enjoying every beautiful sunset offered for our viewing. She is truly my soul mate.

  • MiniMorg

    This was a very interesting article. I have been in a relationship with my significant other for almost 3 years and was diagnosed with fibromyalgia and ME a year ago.
    Our relationship was tested at first as it was very hard for both of us to accept.
    But now we are stronger than ever and I could not thank him enough for the things he does to help me every day whether its physical or emotional support.
    Granted that we both still live with our parents and because I am working only part time it can be frustrating as saving up to move out is practically a no no. He is almost 22 and I am 24.
    Just as this article says I try my best to be receptive to his needs too, i.e frustration when he cannot take my pain away, or we have to sacrifice some days out etc.

  • http://browserlife.blogspot.com/ Karen Brauer

    There are some inspirational stories here. Thanks so much for sharing them.

  • Carolynn

    Thank you for this one. This affected me more than any other article here. My husband and I met when we were young- 14, in perfect health and perfectly adorable. We got married at 19. When we were turning 33 together, I had a series of surgeries that changed our lives.

    He has been my care giver through all of this mess. When my abdomen had to be opened, twice, and left to heal as an open wound (about 5 inches deep by 5 around) for 6+ months each time, HE changed my dressings twice a day. That is more than a year’s worth, twice a day every day, of changing my gooey belly dressings.

    The chronic abdominal pain I am left with has changed us a lot. Sex. Our abilities to just go out and play. Simply riding in the car does me in- bumps in the road are evil!

    What I have learned, if I had any doubts before, is that he truly loves me. This is not what either of us expected when he signed on as Husband. But it’s been rare that he loses patience. He has taken care of me, and stepped up with the kids and cooking. Even through losing our home, he’s been 100% on my side. I thank him often, but there were things in this article that reminded me of things I owe him- apologies when I lose patience, dates, more vocal appreciation.

    Thanks for writing this one. :)

  • Karen Vasquez

    So much ueful information. Thank you for posting!

  • Finny

    That’s funny…the husband and myself never went on dates until after we got married! Now we have date nights at least once or twice a month, depending on money. (Neither of us can drive, due to vision, so we depend on public transit.)

  • JUDY

    this sounds like i could have written this! my life partner, who i now live with, is my ex-husband. we both have multiple medical problems, and take care of each other. he is cranky some of the time, kind some of the time, and a LEAVE ME ALONE some of the time. i just gauge the day by how i feel, and then find out how he is that day. we have been together for forty years, and we have seen each other develop new medical problems over the years. yet, i can’t see me living with anyone else. it’s true-when you understand each other’s limitations, it isn’t any easier, but it enables one to cope. many thanx for listening! GOD bless! judy

  • http://www.thisbearbites.com Pamela Glazebrook

    Your words could’ve been written by me.
    We married my senior year of high school. I had turned 18 the week before, he was 20. We hunted, hiked, camped,and had our first child a year and a half ofter marriage. Bad pregnancy – what ever could go wrong just about did. I almost hemorraged to death after having him. In the end I managed to give hime a sister and lost three babies. Develpoed PID as a redult of poor medical care and hit menopause at 22 and had a hysterectomy at 23. Final diagnosis was Adenomyosis. My Drs had labled me a hypochondriac in high school because of all my complaints. When my final pathology came in, my doctor at that time did apologize for all of the medical people who had ignored me for so long. The man standing beside me had never doubted me. It is why we tried to have our family so young. I didn’t feel I had too many child bearing years left. Let’s hear it for women’s intuitions!
    We adopted a child in our mid twenties and were thinking of adopting another, I had to go through extensive carpal tunnel surgeries on both arms. (hands, wrists, and elbows) I was just sailing along again, when I ended up with a bone tumor in my right foot at age 29. Developed RSD as a result, which spread through out my body. I lost my livelihood a hair and tanning salon. It was then my husband’s company announced they were closing. I was still facing several bone grafts to repair what the tumor had done. We were as stressed as any couple could possibly be and my husband had to go through a career change, we had to leave the communites we were raised in, and our dream house for his new job. I hit major medical (over $100,000 in medical bills) every year for three years straight.
    Add Hypothyroid, Fibromyalgia, and my gall bladder had to go. I developed Adhesions as a result of all my previous surgeries which caused my IBD. Had to have surgery to fix some of that damage.
    I had rehablitated through everything to get a new career path started. I almost made it a decade when my body decided it was done. My RSD was maxed out and they thought I had MS or Lupus. The Drs decided it was neither, then it was Lupus and then not. My liver and kidneys are in trouble according to tests. After several years I have my true diagnosis of: Sjoren’s Syndrome.
    We raised our children through that turmoil and they learned just because life is falling down all around you, it doesn’t mean you give up on each other.
    My husband has added a little medical excitement, but compared to me he is pretty healthy. I did come within hours of losing him two years ago – he went sepsis from MRSA.
    We are empty nesters and grandparents now. I am retired due to my disabiltites and we are trying to decide the best path for the rest of our life. What to do for my disabilities and his retirement.
    We didn’t get to live “succesfully” even though my husband is very good at what he does. We have never had a real vacation. Instead, we paid medical bills. We are still each other’s best friend and we love each other dearly. Have we always liked each other? Of course not! Has he always been the perfect illness companion? No, but his intentions were good. We have survived because we always understood that the love was always there.

  • http://browserlife.blogspot.com/ Karen Brauer

    Unfortunately, not all relationships survive chronic illness, not even the ones that were strong to start with. Some might have fallen apart after 10 years or 20 even with both partners healthy due to a variety of reasons. My first marriage was to a man who had zero tolerance for illness or anyone he considered weak. I initiated a divorce when I discovered that the reason he had no friends wasn’t that he was shy; it was because he was cruel. I am grateful and lucky to have met the man who is now my husband but also must acknowledge that our marriage works because we BOTH are invested in it.

    I am truly saddened by the relationships that break up. But if you have done all that you can and your partner still calls it quits, I hope you realize that it does NOT mean that YOU are a failure. And if you find yourself in an abusive situation, of course get out ASAP.

    By writing this article, I was hoping to encourage those who are just starting out or maybe those who believe they can’t possibly be in a love relationship if they are sick. Many of my friends are going through divorces right now or have done so recently, and I had been asked on more than one occasion why I am happily married despite the odds. I certainly don’t have all the answers and have at least as many flaws as anyone else, but I hope that by sharing what has worked for me it might provide a positive note. I just haven’t seen that many positive articles on relationships and chronic illness and was hoping to add a little more balance.

    There are no guarantees in life. But if you have truly done your best, hold your head high.

  • Sandy G.

    After 25yrs of knowing someone, i really thought i would be growing old with him. I was wrong. When we first met, I was athletic and outgoing just like him. Playing sports and coaching were my life! We have two beautiful girls who are almost grown and i was looking forward to the “empty nest” time…
    Things change when u get a chronic illness/s. In the beginning of the diagnoses, it seemed like “we” were working thru it together. But as the years went by and the symptoms got worse, disability came, loss of income happened and “he” disappeared more. I tried all that u had stated in the article plus some, but when your “other” decides he is done there is nothing u can do. BUT, i have learned the most valuable lesson thru this all….. that life is a gift! Family comes first, and to slow down and enjoy your loved ones!! I don’t believe if i hadn’t gotten sick i would have learned this lesson. I see life differently now.
    Too bad “he” can’t see it that way. I will be ok. I will.
    Sandy

  • http://aloofelf.blogspot.com Leeloo

    This article….is spot-on. Thank you so much for writing such a succinct yet eloquent article. I loved it.

    And, it’s so very, very true. There are so many people who can take away from your words and apply those suggestions to real life.

    I had episodic migraine with aura up until 2006. Now I am chronic, and the pain and suffering are never-ending, along with chronic Epstein-Barr’s. My husband is my caregiver, and I take every opportunity I can to give him the accolades he deserves for toughing this out alongside me.

    So many people think chronic, invisible illness only impacts the sufferer, and that’s just not true if you come with a significant other, or family that cares. Everyones’ role shifts, and often the caregiver gets lost in the fray, when they shouldn’t.

    So again, thank you for writing this.

  • MEM

    My husband and I met after I got sick in 1994, so he knew what he was signing himself up for. We were that nauseatingly perfect couple that cuddled and did the chores together and discussed rather than argued. I ran the household (did what chores I could, paid the bills, was administrator of everything) and he had the outside job, which he always insisted was a great arrangement because he didn’t have to think about anything boring like making sure the gas bill got paid! We did everything textbook-right and always swore that we were going to be the ninety-year-old couple in rocking chairs on the porch… but nine months ago, just a few weeks before our fifteenth anniversary, he flatly stated “I want a divorce. I’ve been a caregiver for over sixteen years, and I can’t face doing it for another thirty. I’m done.” Out of the blue. WHAP! So even if you think you’re doing everything right, look even deeper. (And I haven’t recovered from the resulting flare yet.)

  • http://randomdaysofme.blogspot.com BD

    wow, I literally just wrote about this as I was feeling really low in my life because I was feeling like a burden or that my husband wasn’t supportive enough. Truth is, even years into my diagnosis, we are still trying to find our roles and our limits. I have hid a lot of my real pain inside for the fear of I’m not sure what, could be so he doesn’t get scared or could be so I wouldn’t appear weak or could be because I didn’t want to change the dynamic of our lives with MY disease. It’s still a work in progress and I’m still working at it. Great article!