What Do You Do When a Loved One Becomes Chronically Ill?

By Suzan Jackson

Sooner or later, it happens to all of us. A beloved friend or family member develops a chronic illness, and their life changes dramatically with that diagnosis and new restrictions. Of course, we want to be there for our loved one – to say just the right thing and offer help – but the sad truth is that many people instead say nothing, for fear of saying the wrong thing. Here’s how to reach out to your friend or family member to support them when they need you most, based on the experiences of people who are chronically ill.

Don’t Say Nothing. Your loved one needs you now more than they ever have before, and your silence will be misinterpreted as not caring or abandonment.

Do Try Simple Statements of Support.  Simple words like, “I am sorry you’re going through this” or “We are thinking of you” will mean the world to your loved one and will tell them that you acknowledge the challenges they are facing and are there for them.

Don’t Offer To Help Without Specifics. Most people who are used to being independent and self-reliant find it very hard to ask for help when they become ill, no matter how much they need it. General offers of “Let me know if I can do anything to help” will rarely get a response, even if your friend desperately needs help.

Do Help in Specific Ways. Call your family member and tell her you are going to the grocery store anyway and ask what you can pick up for her. Bring a prepared meal to your friend’s house, so she doesn’t have to worry about cooking (just call early in the day so she can plan ahead). Offer to come by on a Saturday (perhaps with help) and clean her house. If your loved one has children, the best thing you can do is pick them up to take them out somewhere – the kids need the fun & time away from the illness and your loved one needs rest.

Don’t Offer Unsolicited Advice. Your loved one has medical professionals for treatment advice. Even when your intentions are good, unsolicited suggestions are often misconstrued. Telling your friend that your brother’s wife’s second cousin was miraculously cured by XYZ Is not helpful because every case is unique. When I first became ill with a serious immune disorder, I heard things like “you should take vitamins,” and “just get outside more.” These well-meaning suggestions made me feel like my loved ones didn’t understand the severity of my illness.

Do Pass Along Scientific Studies (But Not Too Often). The exception is if you come across a new study that is completely relevant to your loved one’s condition – perhaps a new treatment or research that helps unravel the mysteries behind a disease. Then, do send a link or print a page for your friend or family member to share with his doctor. When a new study was recently published about my illness, I was very touched when several healthy friends sent me links. It showed me that they understood and cared. Just don’t inundate your sick friend with too much information.

Don’t Make Unplanned Visits or Phone Calls. People who are chronically ill sometimes just need to be alone and rest. Always call (or text or e-mail) to find out if your loved one is up for visitors. Sometimes, even phone calls can be overwhelming for a sick person. If you do visit or call, keep it short (unless you are there to help around the house!)

Do Show Your Support. Even if your loved one isn’t up for visits or phone calls, you can still show your support. In fact, it will be greatly appreciated because being housebound is incredibly isolating. Send a card, write a letter or e-mail, leave a voicemail, send a package, or do something to help her (see above). During the early years of my illness, one friend told me she’d left a surprise at my front door. It was just a card, some wildflowers she’d picked, and a book, but it meant the world to me and reminded me that I hadn’t been forgotten. Another friend from far away sent me a care package during a particularly rough time.

Don’t Pretend Everything Is Fine. When you do see or talk to your loved one, don’t act falsely cheerful and pretend everything is OK. Though you may think your friend needs “cheering up,” that will be experienced as not acknowledging what she is going through. It is incredibly painful to be suffering and to have those around you pretending everything is normal.

Do Acknowledge the Illness & Show Interest. The best approach is to accept the illness matter-of-factly and follow the lead of your loved one. If they want to talk about it, be a good listener (remember, no advice!). If they’d rather hear about your life and the outside world, fill them in. When they are feeling poorly, don’t ignore that but address it straightforwardly (see above on what to say). Your loved one will go through the stages of grief, so his or her anger or sadness should be acknowledged, not ignored.

Don’t Pity or Judge Your Loved One. Of course, you feel bad that your friend or family member is suffering, but there is nothing worse than seeing a look of pity in someone’s eyes. Try hard not to judge your loved one, either. It happens often with those who are chronically ill. Friends and family question their diagnosis, subtly (sometimes not so subtly) blame them for their illness, or question the treatments used or the choices made by the patient.

Do Show Compassion, Empathy, and Acceptance. Instead of pity, show compassion and empathy. What’s the difference? Empathy is putting yourself in their shoes, imagining what they are going through. Compassion is showing that you care, through both words and actions. What a chronically ill person most wants is simple understanding and acceptance. Recognize that they know more about their condition and their limits than you do. Accept that this is their new life, while acknowledging that they are still the same person you care for.

Don’t Take Cancellations or Absences Personally. Chronic illnesses are unpredictable. Your loved one probably feels OK some days (or hours) and incapacitated others. When you make plans together, your sick friend or family member may need to cancel at the last minute. Or perhaps he was able to attend one event but not the one you invited him to. It is not by choice; he is at the mercy of the disease. Don’t begrudge her that rare occasion out, even if it is not with you, and don’t take it personally when she has to cancel plans again. Drop your own expectations and biases and just accept her limits.

Do Keep Inviting! No matter how many times your friend has to cancel, keep including her and inviting her so that she knows she is not forgotten. I love to get together with my two closest friends for lunch or a short walk, but I often have to cancel at the last minute. I feel blessed that they both understand and accept my limits…and keep asking me!

With these tips, you can provide the support that your loved one needs. Above all, don’t forget about your loved one, even if she is stuck at home most (or all) of the time for years. My psychologist referred to this as “empathy fatigue,” that after awhile, people get worn out from trying to be supportive and just disappear. It’s incredibly painful to lose a friend because you got sick. Just check in once in a while, send a card, offer (specific!) help, and above all, let your friend or family member know that you are thinking of them and that they are not forgotten. What they most need from you is simple acceptance and compassion.

Suzan Jackson’s articles, essays, and reviews have appeared in a wide variety of both print and online publications, and she has been a frequent contributor to FamilyFun magazine (circulation 2 million) for over 10 years. She has written specifically on health-related topics for a variety of websites, including a monthly article for ProHealth. Please visit http://suzanjackson.homestead.com/clips.html and http://livewithcfs.blogspot.com/