What to Do When Someone You Love Is Sick and Struggling

“Love is not what you say. Love is what you do.” ~Unknown

As a graduate student in public health, I spent my days talking about illness and death. Normal lunchtime conversations among students covered topics like: how to define a case of multiple sclerosis, the most effective strategy to stop HIV transmission among injection drug users, and the probability you’d be alive in five years after a breast cancer diagnosis.

None of this talk about illness remotely prepared me for the experience of illness. I was blissfully naive when I started dating a man named Evan with a cough that wouldn’t go away.

Over the course of a year, Evan got progressively worse in a series of fits and starts. He was in and out of the hospital and died toward the end of 2012. I was heartbroken and devastated. But within a few years, I healed and was back to participating in normal life.

Then, I started getting dizzy spells and severe face pain. A few months later, a very large yet benign tumor was removed from one of my sinuses. I spent months confined to my apartment waiting for my sinuses to heal and the pain to subside.

Through these experiences, I’ve seen how a lot of our well-intentioned responses to illness don’t have the intended impact. Here are the top eight lessons I’ve learned a lot about how to be a terrific support as a family member or friend.

1. Do what is needed, not what you think you should do.

At the lowest points in Evan’s illness, I had a hard time eating. I barely slept. I was always bracing for what would happen next.

Evan spent twenty-one nights in the hospital over the course of eleven months. I didn’t spend any.

Not because I didn’t want to. Because he asked me to leave. Because he wanted me to get enough rest so that he could count on me coming back.

So that I’d be safe to drive and bring him outside food. So that he could trust me to research the doctor’s recommendations and help him communicate his choices.

Because he could tell how scared I was, and my fear was making him feel anxious.

Many of us have dreams of being the valiant caregiver who selflessly never leaves the hospital bedside for a moment. If that’s how you think it will go down, I want to tell you something: that may not be what your loved one needs from you.

Leaving their side can feel awful. You may feel crushing guilt from not being able to do enough. Friends or family may question your commitment. And when things are really bad, there’s the gnawing fear that you’ll miss out on the moments when you were truly needed.

But if going home to sleep, taking a walk, or spending an hour crying on your friend’s shoulder is going to make the difference between you being a guilt-laden, anxious wreck and your best self, that is what your loved one needs from you. Serious illness is a marathon. Don’t mistake it for a sprint.

2. If your loved one wants to talk to you about death, listen.

For most of the time that Evan was ill, we thought that he had a lung disease that was treatable. It was only in the last two weeks of his life, the day after they sedated him and put him on a ventilator, that we found out that he was terminal. A rare form of lung cancer.

A month before his death, when he was still at home, Evan had talked to me about what he wanted me to do if he didn’t make it. I cut him off after one sentence.

Of course I would do what he asked, but I told him that this wasn’t something we needed to talk about. He was going to get healthy!

This conversation is my biggest regret.

Evan didn’t think I deserved a boyfriend who was sick. He tried to break up with me twice so I could go find a “normal” boyfriend. I wasn’t having it.

On that night, I wish I had acknowledged how scary things were for him. I wish I had let him know that whatever happened, I had no regrets about the time we spent together. Because I never got another chance.

Don’t miss an opportunity to hear what your loved one wishes for you, because you think you’ll be able to do it later. Later, may never come.

3. Every so often, check in on the support person.

After Evan died I met up with my friends Derek and Tatiana who had been on their own journey through illness. They were engaged, and Tatiana had been in treatment for breast cancer during the same time that my boyfriend was ill. Derek had been taking care of her. When we met up we laughed about all the well-meaning people who emailed us “cures.”

Derek and I agreed that one difficulty was how friends and family were so focused on how the patients were progressing that us caregivers often felt invisible and unappreciated. Everyone wanted to know how the patient was doing, what treatment we were trying, and if it was working. But few asked me and Derek how we were doing.

It’s natural for people to be curious about what’s happening with the illness and the patient. But illness impacts all the people close to the patient, too. Caretakers shift our work schedules so we can be there at the important doctor appointments. We file the bureaucratic hospital paperwork. We learn the ins and outs of insurance companies.

Being a support person is stressful and scary, yet caregivers often feel conflicted about asking for help themselves. They don’t want to draw attention or resources away from the patient. As a friend, regularly checking in on what you can do to help the support person can help them be a more reliable support.

4. Don’t hide the fact that you’re unhappy for months.

When your loved one is sick, you may decide that you want to put off a difficult conversation with them. I know, because I’ve been both the support person who has put off the conversation and the sick person who wasn’t told something.

When I was sick, I wasn’t able to be the kind of friend that I was when I was healthy. I was grumpy. I wasn’t as quick to pick up on nonverbal cues. My thinking was muddled and foggy.

During this time, I had a close friend who got tired of sick Lori. When I reached out to her, she would delay our get together, chalking things up to a busy work schedule. Eventually she would agree to meet up and then not enjoy the time we spent together.

Months later, when I was feeling better I asked her if something was wrong. To her credit, she fessed up that she hadn’t been feeling satisfied by our friendship for months. She hadn’t said anything because she was worried I wouldn’t be able to take it. We are no longer friends.

If you’re feeling unhappy about a relationship with a person who is sick, don’t bottle it up and hope it will go away. If you’re just showing up out of a sense of duty, you won’t have much staying power. And that day when you disappear with no chance of returning is more than a disappointment for your sick loved one. It’s a crisis.

5. Understand that “cheering up” a sick person may backfire.

The surgeon who took it out my tumor warned me that it would be months before I was pain-free and back to normal life. I shared this information with my family.

Nevertheless, about two weeks after the surgery my mom started asking me if I was pain-free every time she texted me. Three weeks after surgery, she sent me pictures of her trip to Disneyworld with the rest of my family. We’re at the Magic Kingdom!!! There’s a new Under the Sea ride!!! Hopefully, you are out of pain by now!!!

I’m sure that my mom’s intention was to try and cheer me up. To remind me that there were fun things to look forward to in life.

Instead, those texts and photos broke my heart. They showed me that my mom was not ready to accept the seriousness of my situation.

I was at the beginning of six weeks of excruciating pain and no effective medication to counter it. I spent a few hours each day screaming into a pillow and questioning whether life was worth this much pain. After those texts, I stopped asking my mom for emotional support, because I no longer believed she could give it.

If your loved one is really sick, be sensitive. Acknowledge how tough things are before you gush about your magical vacation, your budding romance, or the wild dance party you went to last night. And if your loved one tells you they’re not in the mood for happy stories right now, honor their wishes.

6. Realize that your chicken soup may not be wanted or helpful.

Healing often means special diets. After my surgery I was on a paleo diet with a Chinese medicine twist. Every few weeks the Chinese medicine recommendations would shift as my body’s needs shifted.

It was exhausting to keep track of what I was supposed to eat and what I wasn’t. But I couldn’t deny that the diet was helping. I was feeling better.

So every time someone offered to make food for me I felt anxious. My dietary rules were complex and varying, and for a while I was in so much pain that I was communicating with a whiteboard, which made it hard to communicate the myriad ways you could mess up.

There is nothing worse than receiving food that a kind person has made for you that you can’t eat. Even though you tried to tell them how they had to read the ingredients list on everything. Even rotisserie chicken. Because that “seasoning” contains gluten that you’re not supposed to eat.

If you do make food for someone on a restricted diet, know that you are not just making food. You are making medicine. And your care and attention to detail needs to be the same as if you were preparing to give someone medicine.

7. Be prepared for plans to change.

Every year, my friend Charlotte invites a group of us out to dinner for her birthday. When she invited me in 2015, I told her it would be a long shot for me to go, but I wanted to try. Her birthday came two months after my surgery.

I was in bad shape. I was having pain episodes that had me crying into a pillow a few times a day. I was also on a restricted diet and trying to limit my physical activity so I wouldn’t spark new pain episodes.

Charlotte is one of my closest friends, and she did everything she could to make it work. She chose a restaurant that had food I could eat. She called ahead and asked about stairs and elevators. She figured out which of the options had the shortest possible distance between where she could drop me off and the front door.

And I still couldn’t go. The pain was too bad and I was too tired. I didn’t want her birthday to be spent watching someone cry in pain at her table. Thankfully, Charlotte was understanding.

If your loved one is sick, the fact that they need to change plans in no way reflects how much they care about you. They are not in control of what happens. Trust that they are doing their best. Don’t take it personally.

8. Take all of these guidelines with a grain of salt.

The one certain rule is that there are no certain rules. Depending on the circumstances and the people involved, all of these things could change. Some people may want you to distract them from the circumstances or the pain by pretending that everything is like it used to be. Or they may appreciate you holding your tongue.

If you aren’t sure that what you are doing is feeling good to the sick person, ask them. Let them know that it’s okay to tell you the truth. You want to care for them and if there’s anything that you can do differently to take better care of them, you want to know what it is.

Have you been ill? What did you find most supportive? Least supportive?

Have you been a caregiver? What are you most proud of? What do you wish you had done differently?

About Lori Puma

Lori Puma works with coaches who have made tough changes to create a better life for themselves. She helps them share their story so that they get recognized as experts and make more money. If you want an honest, behind-the-scenes look at what it takes to turn a passion into an online business, check out The First $20k.

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  • Paula Russell

    I have been on both sides of this situation and I want to thank you, Lori, for the absolute best article on what really helps that I have ever seen.I hope this gets shared all over. Thank you for taking the time to write down your insights.

  • Oh my gosh Paula, thank you so much for your comment. I am touched that it resonated so strongly with you, especially since you’ve been through both sides yourself. It is comfort to hear that my experience may serve to help others.

  • mathildamoon15

    As with most lessons in my life, this arrived at just the right time. I have an aunt and an uncle who are both undergoing recovery from illness. I wondered aloud just last night “How on earth can I help these people?” It’s a horrible feeling. Thank you for coming into my life at the exact time you were needed, with the exact info I needed. 🙂

  • Kelly Roberts

    Thank you so much for this article. I’ve been thru both sides. Im currently 34 suffering through chronic pain from both a bad hysterectomy at 20 and 4 awful MVA leaving me unable to live my life. I just got to 6 mo cut off with pcp for 9th time in 10 yrs. My 76,75 yr old grandparents raised me and continue to help me thru the struggles as the medical society fails me. I fear what each day brings. Knowing I’m not alone helps. Now if only the medical field would understand. Thank you.

  • Minnie

    This also applies to mental issues. I am currently under a lot of stress because my married 33 yr old son is experiencing increasing mental stress. He has always been “mercurial”, which people found inspiring, but since he got married 5 yrs ago, he has gone from an aspiring business man to a negative, angry, unmotivated maniac. Recently his behavior has been increasingly erratic, and his wife is unable to figure out what to do. She constantly asks for advice, and I have given her many options to look into, but she does not pick up on any of them and just keeps complaining that she is unhappy and wants to travel and have children and is unable to because of his behavior. I have health issues that have been aggravated because of the stress and am unable to do more than what she should be doing. It’s a pretty bad situation. I have always felt that if the person you love is in trouble, you first think of helping them before thinking of yourself.

  • Heather West

    I have worked in the ‘health’ industry for 40 years as a R.N. and a Psychotherapist. Privately I have been a carer of my daughter who has Lupus – an irreversible chronic illness that just gets worse as each major organ becomes involved. Over time she has lost many friends who only want to be around her when she is in remission. As you state she is powerless over her illness, yet health discourses purport to sickness – then wellness. If illness progresses other people do not get their ‘friendship’ needs met and over time the relationship fades away. Family members are unaware of their indifference as there is rarely any ‘good’ news. I so appreciated your inclusion of the Disneyland photo’s from your Mum. A perfect description of what people do when at some level they don’t want to know despite routinely asking how are things going. My experience has included friends asking me about her health, and silly me discloses another round of hospital admission, then I don’t hear any follow up.
    Wat has helped me is to engage a psychotherapist who helps me not to get my ’emotional baggage’ mixed up with her illness. The result being that when I am with her I am fully present in the moment so I can hear her issues – no I can’t fix her but I know I am as authentic as I possibly can in the NOW! As that is all any of us have.

  • Wow, Lori. This is really beautiful. Thanks for sharing. 😉 #keepgrowing #keepcreating

  • vixenmonkey

    I am my mother’s caregiver. Sometimes I find myself thinking it will be a mixed blessing when she leaves us. She’s in a lot of pain and it makes her depressed. A once vibrant woman is basically housebound. She’s had a degenrative disk disease which has caused severe arthritis, fibromyalgia and neuropathy. She is now in the early stages of Parkinson’s. Soon, my dad and I will have to think about a care facility. I’ve been taking care of people my whole life. I want my own life but feel selfish. And I’m not sure I’d know what to do with myself.

  • Sally Ulianich

    I’ve had some fairly severe illnesses, but I try not to complain or cause a big deal over them. But it seems the result is people don’t think I’m truly that ill, when in fact I’m doing everything I can to keep it together. They try to get me to eat foods that will make me sick or invite me to do things that are out of my energy level or capability.

    With my latest health excitement, there are days when I’m on a strictly clear liquids diet. So if I reject food offers from others and they keep hounding me about it, I kindly inform them that I have a colon disease and absolutely cannot stray from my diet or I’ll end up in the hospital. It may be a bit extreme, but it’s frustrating when people are relentless about something so trivial as what I choose to eat.

  • Thanks Ewen. Take care!

  • Oh Sally, I’m so sorry to hear that people aren’t respecting your clear and necessary “No.” That is so frustrating.

    I think sometimes we humans don’t like to admit that things are difficult for someone else, because it makes us think about how little we have control over our own circumstances. But it’s so isolating when other people don’t believe what’s happening. Wishing you health and easy relations!

  • That sounds like a challenging set of circumstances vixenmonkey. It’s very hard to watch our loved ones lose their ability to participate in life like they used to. I think it’s natural to want your own life and to feel conflicted about wanting it when you’re also in a caregiving role. Wishing you peace!

  • Paula, for some bizarre reason, my comment to you from a few days ago was marked as spam. Here’s what it said.

    Oh my gosh Paula, thank you so much for your comment. I am touched that it resonated so strongly with you, especially since you’ve been through both sides yourself. It is comfort to hear that my experience may serve to help others.

  • Heather, thank you so much for sharing your your experience. I hesitated to include the Disneyland photo story, it was so painful to receive. Your comment reassures me that I made the right decision to share it. Yes, the frequency of someone asking a question isn’t always an indicator of whether someone wants to hear the ‘real’ answer.

    My heart just breaks to hear your daughter’s experience with friends who only want to be around when things are going well. But I’m so glad that your daughter has you as a support. Someone who understands that her illness is what it is, and can accept and love her as she is. Blessings to both of you.

  • Minnie that sounds really stressful. It’s very hard to watch our loved ones suffer. Especially when it’s not clear what or even if there’s anything we can do to help. I hope that you find some relief for your health issues and that your son and his wife are able to find their way.

  • I’m sorry to hear that you’re dealing with chronic pain Kelly. That is a tough road and many in the medical society seem at a loss for how to help. I’m glad to hear that you have family helping. And you are certainly not alone. <3

  • Not knowing what to do *is* a horrible feeling mathildamoon15! I’m glad to offer some helpful info. I wish your aunt and uncle good health and all of you peace and ease with the healing process.

  • 😉

  • Karen Kelly

    Thank you. So glad to meet you at WAG today. Amazing journey and very helpful.