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10 Authentic Tips for Partners of People with
Chronic Illness: Preserving Patient Identity

There is some good research out there that explains the effect that chronic illness can have on people – physically, emotionally, and spiritually. Aside from sickness and disability, it takes a huge toll on their sense of who they are, how they contribute, and how they envision their future. In middle-age (especially for women, even more true for women of color), we don’t need help to feel invisible or forgotten, but top it off with a chronic illness and a person can really feel like hanging it up. 

Think about it. By mid-life, many of us have established a career, a family, friendships, and we want to feel like we are contributing to our own health and happiness and the well-being of others. But a person with chronic illness is likely to reflect on this – how hard they’ve worked to be where they are and now forced to lie back and watch the fruits of their labor quickly slipping away. 

 

If you are a partner of someone with chronic illness, there’s no doubt this is taking a toll on you and your relationship, too. For now though, here are some tips to consider, as a caregiver, for making life a little more bearable for your loved one, particularly those suffering with ME/CFS. I’ve added personal anecdotes for some perspective.

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1. Compromise on an everyday temperature for the house.

 

Temperature is important because it has a strong effect upon mood. Mood, as you know, has a strong effect upon behavior and how you treat one another. This was hard for us because I was going through menopausal hot flashes and night sweats while she was mostly freezing all the time. We decided upon 75 degrees for the house in the winter, 73 for summer. I always have a fan beside me; she always has a small space heater and a weighted blanket. Some nights we just sleep in separate rooms, showing an understanding for each other’s needs and never forgoing the good-night kisses.

2. Accommodate for light & sound sensitivity.

 

People with ME/CFS often struggle with light and sound sensitivity, especially on days with post-exertional malaise (PEM). Often, because of the PEM, they are unable to communicate their needs, so you have to pay attention. It’s an easy thing to recognize though - someone covering their ears or burying their face under the blanket - and it’s an even easier thing to fix. Turn off unnecessary lighting, close the window blinds, or use black-out curtains. Remember your partner doesn’t want to stay submerged in darkness anymore than you do, so adjust lighting throughout the day as the sun moves, the day darkens, or the sensitivity passes. Keep really cool sunglasses on hand, too. For sound sensitivity, we use noise-canceling earphones – if they are good ones, that takes care of itself.

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3. Have a communication system.

 

There’s nothing worse than being too sick to tell a caregiver what it is that you need or want but can’t get for yourself. Keep in mind that those needs and wants are usually just the basics - a cold drink, a warm blanket, the remote control – and we all know the road to recovery is quicker if those basic needs are met. If you don't know sign language, develop your own communication system. We know ASL, but on days of PEM, she is too fatigued to even move her hands. We relied on eye-blinking. Once for yes; twice for no. This also means you have to know what yes/no questions to ask, like “Do you want some water?” Sometimes a simple flip of the middle finger will suffice for either party, especially when open communication has run its course for the day.

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4. Recognize their contribution.

 

With any chronic illness, people are known to experience huge losses - their careers, hobbies, friends, and the ability to even engage in personal hygiene and self-care. Being house-bound, if not bed-ridden, makes a person begin to feel worthless – like they have nothing to contribute anymore and like they have become a burden to others. Work to combat this for them by maintaining or assigning a responsibility or two. If they used to do the grocery shopping, have them do it through an online delivery system now. If they used to put the kids to bed, have the kids come to them for their nighttime story. Often, daily jobs are more cognitively or physically challenging now then they used to be, so you can scale it back; just don't cut it out entirely. Princess remains in charge of shit like taxes and insurance and saving us money and reading any and all fine print. If she's too sick to do it, it just has to wait (not my forte). 

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5. Be mindful of emotions and cognitive ability.

 

Chronic illness, particularly ME/CFS, often means lots of pain, fatigue, and brain fog. And those things can put you in a headspace where nothing makes sense and every task and interaction seems unbearable. You might think if a person is lying in bed all day they could read a book, but that takes more cognitive function than you realize and probably more than your partner has available. You might think they could watch a movie with the family, but if it is a movie they have never seen, it still requires attention they might not have available. You might think that talking to someone on the phone is easy enough, but conversation requires memory, attention, and language on a level that can send your partner right back into PEM. This is especially true of highly emotional conversations – positive or negative emotion, makes no difference – because the brain can’t differentiate when it comes to affecting the body’s central nervous system. So what can you do? Introduce them to audiobooks and encourage them to listen to books they already know and love. Watch movies you both have seen and that are worthy of repeating or ones they love but that are new to you. In our house, I’ve been subjected to years of Disney movies and – don’t tell her this – I have really liked them. Believe it or not, she made me a die-hard Marvel fan! As for phone conversations, I have but one recommendation - use an egg-timer. Keep them short, few, and far between. You can be the person in the background yelling, “Honey, I need you!” Or your partner can just be honest about their limitations. Most people will understand – at least those who matter will – but those personal connections need to be kept intact if at all possible.

6. Help them stay clean.

 

If you’ve ever had a bad cold or flu and been bed-bound for a few days or a week even, you know that feeling of ickiness. A nice warm shower, some good hygiene, clean clothes and you’re suddenly feeling so much better. We take for granted our renewed energy that lets us engage in those very basic daily practices. If you’re chronically ill, that everyday hygiene is a CHORE! For those with ME/CFS it can even be enough to cause more PEM. So what’s the point, right? The point is EVERYTHING. Do not let this slide. Cleanliness contributes to our physical wellness and our emotional state. Even if you get them out of bed for a shower and they go right back to bed after, DO it. In fact, change the bedding for them while they are in there. Use a shower chair to limit the time they have to spend on their feet or let them take baths. I always light candles for the bath and drop in a bath bomb. It makes it more of an enjoyable and relaxing activity, rather than a chore. Prep what they’ll need (bath sponge, soaps, razor, towels, etc.) then leave them in peace, but come back and check every 10 minutes or so. I like to make sure she has a cold glass of water and her phone to text me if she needs help. Sometimes, I just climb in with her and it’s suddenly a cheap date! Another tip is providing them with a hygiene bag they can keep at their bedside with travel toothbrushes, powder, deodorant, dry shampoo, hairbrush, lotion, etc.

7. Hire a housekeeper.

 

Even if you can only afford a housekeeping service once a month or every other week, do it. We consider it an essential weekly home service - for our health and our happiness. House chores, as we all know, are a big bone of contention for many couples, so having someone come to do it for you eliminates the possibility of any stupid arguments. If you are home-bound, where to go while the housekeepers are there becomes the question. On pretty days, we sit outside or go for a drive, or maybe out to a restaurant where we can be served a nice meal - surely we both deserve it. This further ensures you have an outing/adventure at least once a week or twice a month, and coming home to a spotlessly clean house after is a really sweet bonus. If you happen to have children still at home, you can talk to them about pitching in more to help around the house, but you don’t want this to turn into resentment or in any other way affect the relationship they have with the parent or family member who is sick. I realize that the topic of family roles is cultural, too, so whatever works for you. Just be sure to do whatever you do mindfully and in consideration of how the illness might mean redefining some of those roles.

8. Find some joie de vivre.

 

When you’re chronically ill, it’s hard to remember what joy even is, much less find the energy to go looking for it. And many affected by chronic illness describe this as their greatest loss. Sadly, some even become suicidal. So yes, hygiene and habits sustain life and make the daily ins-and-outs more tolerable, maybe even comfortable, but for true quality of life there needs to be joy – a reason to wake up each morning, a reason to be. Most of us find it in the simplest and smallest of joys everyday. A wave from your favorite neighbor, donuts served at the early office meeting, scoring tickets to the big game. Those involve going outside and interacting with others. For those who are home-bound, who are in pain, who are sick everyday, there is far less access to these kinds of small joys. And that matters! Therefore, it’s important that those close to them bring the joy. Play cards or board games, sit outside on a sunny day and watch the kids play, give them a mani/pedi. On good days, practice some old dance moves to favorite tunes. You can even schedule things - after all, anticipation is half the fun, right? We dress up for watching the Oscars on television! One other thing here: TAKE PICTURES & VIDEO. Often they won’t want you to, saying that they look too sick. Screw that. Tell them that their soul looks stunning today and the camera is totally picking up on that. You’d be surprised how much that comment can lift a person’s mood and how beautifully they are about to smile for you.

9. Help them find a hobby.

 

Most everyone has a hobby of some sort like reading, boating, or playing an instrument. Hobbies give us a greater sense of self, but more importantly they keep us present and future-focused. For people who are home-bound and chronically ill, it is all too easy to give these up, especially if they involve a lot of physical activity or going outside the house. This is yet another loss for them, so help them identify new hobbies. There will no doubt be resistance at first because they are essentially grieving their losses, so be casual in your mention or introduction of them. If you think they would like knitting, pick up some yarn and knitting needles and bring that home to them. It may go untouched for a while, but it’s there and they know it. Princess started cross-stitching - a far cry from her Obstacle Course Runs, but damn if she didn't master it. And then she got into fashion design, something she always wanted to do anyway but never thought she would have the time. She had a whole week once of feeling well enough and explored hydroponic gardening right in our kitchen. We had barrels of lime basil that whole summer!

10. Join a Support Group.

 

If any or all of these tips so far have felt unattainable or unreasonable given your particular circumstances, you are probably not alone in that. If that’s the case, find a group of others who have the same kind of daily experiences you have. Having a chronic illness (or taking care of someone who does) is exhausting and you each need a place to vent. There are lots of groups online for caregivers and patients, too. Try Facebook/Meta, Reddit, and Quora to name a few.

Above all, be gentle with yourself and each other. Like anything, adjusting to life with chronic illness is a learning curve. But you got this!

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