We all have our own grand notions of how our lives will go. A relationship, our career, even our health. In a perfect world, everyone would wake up to go to work at their dream job, come back home to their lifelong spouse, and retain our good health until the end of our days. For millions of couples every year, that “perfect world” illusion is shattered by a health challenge. Some are fortunate enough to see it coming, but most get no warning or preparation. They must adapt to an entirely new reality in which basic everyday routines get upended by a long-term illness.
This post will share insight you can use for any sickness your partner may experience. However, it will mostly focus on caring for those with debilitating, long-lasting medical conditions.
Long term illness vs chronic illness
“A long-term illness is any condition lasting six months or longer, such as obesity, diabetes, chronic pain, or heart disease.” – Victoria State Government, Health and Human Services
A LTI (long-term illness) that may not have a cure is classified as a chronic illness. Examples of chronic illness: cancer, Alzheimers/dementia, depressive disorders, cystic fibrosis, and autoimmune diseases. For this article, not all LTIs are classified as a chronic illness, but every chronic illness is a LTI.
A new reality
Often, those who find themselves suddenly facing a LTI are emotionally unprepared. They’re most likely scared, confused, they may even have inexplicable feelings of shame. They are, however, almost always vulnerable. We may not realize the pride we hold for our independence until that independence is suddenly taken away.
These individuals have likely gone from managing their lives on their own to now relying on medical care. Whether it’s surviving day to day or simply living comfortably, you will be your partner’s source of strength and empathy.
Here are some ways to offer support to your partner should you find yourselves facing a LTI together.
1. Inform yourself
LTIs affect millions of people around the world, possibly more. As such, there is plenty of information you can arm yourself with for your partner and many ways to get it.
Go with them to their doctor visits to learn as much as you can about the condition. You can get extremely valuable insight by listening to your partner describe how they feel to the attending physician. Doctors will also engage in a sort of Q&A that can provide insight to details of your partner’s specific LTI. Take that as an opportunity to get any questions you may have answered as well. “How can I make them feel better?” “What makes them feel worse?” “How can we make their life easier?” This will also build a rapport for you and the doctor, making future visits more comfortable for everyone.
There is a flood of fact-checked, peer-reviewed information online from Health journals and studies. There’s also testimonials from those living with LTIs filled with personal tips and tricks on how to manage it. A healthy dose of research expands your knowledge on how to best care for your partner through a medical challenge. Intimacy bonus: your partner will love your invested interest into their care and well being.
2. Social support
Social support can help your partner maintain their mental health and quality of life. LTIs will inevitably cause some disruption to routine, but try your best to plan catch-up time with friends and family. Your partner may find it hard to open up about their LTI. They may worry no one will want to hear about it or that they’ll be judged. These are completely normal feelings for your partner to have as they live with a new vulnerability.
Learning to shed this fear of vulnerability brings with it a liberating feeling that their LTI no longer holds this mentally suffocating effect over them. Finding a local support group to attend will help your partner socially cope with their LTI. They’ll learn how to discuss it, be more generally open with it, even learn from mistakes others may have made. If there are no groups in your area, many online groups can provide the same social support to your partner.
3. Seek counseling
The process of adapting new daily patterns, social abilities, and researching can be daunting. Depending on the illness, some may find more trouble than others to open up and accept help. Not every couple is initially equipped with the mental and emotional skills to easily deal with a new LTI.
A relationship counselor will help a couple navigate the mental and emotional nuances of living with LTIs. Where one may struggle to articulate a thought or feeling, a counselor is trained to help us express ourselves and translate those expressions to those we love. Speaking from my own experience, I’ve learned many ways to say or ask something of my partner. A counselor helped me more effectively cater to the medical needs of my partner who suffers from an autoimmune disorder.
New fears and insecurities, thoughts, and questions plague millions of couples living through a LTI. A counselor helps put it all in it’s proper order, making those obstacles just a few less things to worry about. And every worry put to rest is a new blessing awakened.
4. Don’t sweat the small stuff
A LTI diagnosis can lead to doctor-advised adjustments in daily lifestyle. This can include changes to physical activity, diet, medication routine, or a need for rest. Your support and encouragement will help your partner stay on track for their treatment. With this responsibility and all it entails added, it can lead to some frustration on your end. You will feel stressed at many points.
Try to remember that your partner may already feel uncomfortable with your caring for them. “Nagging” is a surefire way to make that feeling worse. Of course you must feel free to express yourself, but keep in mind that expressing frustration over what neither of you have control over serves no purpose except, in this context, to release stress at the expense of making someone feel like a burden. No one, especially the love of your life, will appreciate being made to feel like a burden.
Your partner, living with their LTI, will have some understandable nagging of their own to do. Maybe to do with being fed up with their routine of care and everything that comes with it. They may react harshly to this long-term loss of control over their own life. Expect this, listen, and remind them that you’re on their team along with their doctor. These doctor-recommended changes are what’s going to give you the longest, best quality of life together possible. Love tells us that’s what we want with our partner; discipline is how you’ll get it.
5. Welcome support
Friends and family, upon hearing of your partner’s LTI, may declare their commitment to your shared struggle. Generous offers like making meals, running errands, or light cleaning and laundry will most likely find their way to you. Tempting as it may be to shoot down these offers out of pride, don’t.
These are people who care for you and your partner just as much as you care for them. They want to help, they want to contribute to a better life for you both. Don’t brush it off. Take that newfound time to catch up on things for you and your partner, or even just yourself. Even if “catching up” means becoming comfortably comatose from exhaustion until they leave, do it. Opportunities never seem to present themselves as often as we’d like, so take them as they come.
6. Set goals
What could be done through autopilot before may seem like an insurmountable obstacle with a LTI. So many new challenges to overcome will mentally wear down your partner over time. Overall, it could lead to bouts of self doubt, questioning their worth, and even depression. However, making short and long-term goals can effectively reverse the adverse mental effects of living with a LTI.
It’s all dependent on the specific illness you and your partner may find yourselves battling. If it’s an ailment that limits their movement, a short-term goal could be getting to the mailbox and back. The long-term goal can be as general as “move more freely” or even “move how I used to”. Boosted confidence, a more positive outlook on themselves and their illness will keep your partner’s mental strength where it needs to be to continue living fully.
Taking the time to identify and set goals with your partner does wonders for their mental health in managing a LTI.
7. Listen, talk
Most couples will find themselves with much more time to talk than before a LTI diagnosis. You may find yourself not knowing what to say and without a counselor to help you figure it out.
Your partner may not be open to the notion of blurting out all their feelings and thoughts as they come. They may feel resigned to closing off any possible weakness or complaints out of an innocent desire to worry you less. Pay special attention to their words, their body language, and tone when they speak. You may find yourselves speaking casually about TV shows, restaurants, or future plans. You may find yourselves speaking more in-depth about family, current events, or memories passed. Continue sharing common routines – game night, walking the dog, morning coffee – and introduce a little conversation here and there. Through a more serious LTI, you may come to cherish those shared activities more than ever.
Make the time to regularly journey through each other’s mind. Staying connected through conversation and thoughtful inquiry keeps your partner feeling valued even with a debilitating LTI. Assure your partner that you love them, you support them, and that nothing will change those two things ever.
Ahmed SM, Hershberger PJ, Lemkau JP. Psychosocial influences on health. In: Rakel RE, Rakel DP, eds. Textbook of Family Medicine. 9th ed. Philadelphia, PA: Elsevier Saunders; 2016:chap 3.
American Psychological Association website. Coping with a diagnosis of chronic illness. www.apa.org/helpcenter/chronic-illness.aspx. Updated August 2013. Accessed September 17, 2018.
Nicholson NR. Social isolation. In: Larsen PD, ed. Lubkin’s Chronic Illness: Impact and Intervention. 9th ed. Burlington, MA: Jones and Bartlett Learning; 2016:chap 6.
Wagner EH. Comprehensive chronic disease management. In: Goldman L, Schafer AI, eds. Goldman-Cecil Medicine. 25th ed. Philadelphia, PA: Elsevier Saunders; 2016:chap 13.
Linda J. Vorvick, MD, Clinical Associate Professor, Department of Family Medicine, UW Medicine, School of Medicine, University of Washington, Seattle, WA.
David Zieve, MD, MHA, Medical Director, Brenda Conaway, Editorial Director, and the A.D.A.M. Editorial team
Susan Schneider Williams, BFA, American Brain Foundation