10 Tips for Supporting a Friend or Loved One With Chronic Illness
I was inspired to write this story after reading so many others sharing their own stories and advice in regards to their chronic illnesses. Coming across The Mighty in my quest to find resources of support for my chronic illnesses has been very comforting to me. As anyone suffering from long-term chronic illness knows, it can become very isolating. When I realized that so many others with chronic illness had such similar experiences as I have had in regards to family, friends, medical professionals, challenges of life, etc., I felt immediate compassion for them. I also feel a strong motivation to advocate for compassion and support for our community. I hope sharing my life experiences can help someone else who is struggling.
Here are 10 tips for supporting a friend or family member living with chronic illness:
1. Don’t limit us but respect our limitations. Just because somebody is struggling with chronic illness does not authorize the people around them to try and “captain” their lives for them. People with disabilities should be allowed to have the same hopes and dreams as everyone else and given a fair opportunity to achieve. Sure, sometimes those achievements may be more difficult to attain. There will be some things that they may not be able to do. However, it does not mean it is fair to say they should not try. Let’s face it, all of us, sick or healthy, have limitations. It should be up to us as individuals to figure out what those are. In that same regard, when limitations are revealed, they should be respected. If you know someone who is chronically ill and they tell you they cannot do something or be somewhere because of their illness, try to be understanding of that. They know their bodies better than you and if they tell you something is going to be difficult for them, believe them. Know they are not trying to let you down – they are just trying to take care of themselves. They should not be made to feel guilty for that.
2. Learn about our condition(s). One of the very best ways to show support is to become educated about the illness. Learning about the symptoms and treatments will show you care and want to be there to support. You will also be surprised how this opens the door to conversation and connection. One of the best ways to show support to someone fighting a chronic illness is to become informed on exactly what they are fighting. You will likely be surprised to learn about what they are going through since many people with chronic illness may not share the full extent of their struggling.
3. Focus on being supportive, not trying to fix us. I have five autoimmune diseases. They are not curable. Yes, there may be treatments or even lifestyle changes that can improve certain illnesses, but please don’t ever assume you know how to fix someone with chronic illness. Just because drinking some nutritional shakes cured your gout does not mean it will stop my spine from fusing. Just because your nasal polyp disappeared after you prayed does not mean praying will heal my brain lesions. Do not assume it must be caused by what I am eating when you don’t even know what I eat. (I eat very healthy and organic food and avoid hormones, GMOs, etc., by the way.) Being sick is not our fault. It is not a punishment. Avoid comments starting with, “You should…” Stay away from comments that come from a place of judgment and instead try comments that come from a place of compassion.
4. Be aware that looks can be deceiving. Although we may feel like the walking dead, we don’t necessarily look that way. Do not assume we don’t struggle because we don’t struggle out in the open. I can do most of what everyone else can do, it is just 10 times harder. I love the water and I do just about any water activity I am capable of. I love to snorkel, swim, kayak and go river rafting. There are some activities I just can’t do. I am OK with that. Keep in mind that just because you see someone with chronic illness partaking in the activities of life does not mean they are not truly sick. Doing the activities I love is vital to keeping me going for many reasons, both physical and mental. However, that does not mean those activities come easily for me. Quite the opposite, actually. I may have to make adjustments and alterations you are unaware of. I will also pay with extreme fatigue and pain for days after a particularly active day. When you have a disease(s) that is there to stay, you have to learn how to evolve to get through life. When you see me smiling and laughing, that does not automatically mean I feel fine. I want to share in life’s joys just like someone who’s healthy. Just because someone is not in a wheelchair or on crutches does not mean it’s easy for them to get around. Just because you see them moving around doesn’t mean they are not in pain. You may not know they have to take pain pills just so they can function at those social gatherings or busy days at work. Perhaps the next day they may be so sick that they will be couch-ridden recuperating. When you deal with something every day of your life, you don’t bother mentioning it everyday. You evolve to a new normal but that doesn’t mean it does not affect you.
5. Remember our reality is different than yours. Understanding chronic illness is like most things in this world, in that if you have not experienced it yourself, it can be very difficult to understand. For example, somebody who deals with chronic migraines has a much different experience than someone who gets an occasional headache. Someone who has a little trouble sleeping here and there has a much different experience than someone who has true insomnia. Everyone will experience pain, fatigue and other ill-feeling symptoms during different times in their lives. That is just part of life. However, the levels of such symptoms can vary immensely from person to person. Do not ever assume the pain you may have felt is equivalent to what someone else feels. Also, people handle the symptoms in different ways. Just because someone does not complain about their symptoms does not mean their pain is less.
6. Small gestures make big impressions. There are a lot of online communities for people struggling with chronic illness. By far, the number one topic discussed over and over is the feelings of loneliness, judgment and abandonment people experience and how horrible that can feel. When someone is going through a difficult time, that is when they need people around them the most. Coincidentally, in many situations that is when the people around them flee. There are a lot of theories that go around the chronic illness community about why this is. I could write a whole page on that. Regardless of the reason, what I would say to people who know someone who has a chronic illness is to simply stay connected. A small gesture that may only take you a few minutes of your time can have a big impact on somebody living with a chronic illness. This could mean sending a card, texting a supportive message or funny picture, inviting them over to watch a movie or asking if you could bring a movie and dinner to them. Keep in mind that when somebody is feeling particularly ill, they may not be up to housecleaning and therefore may not want people over. On the other hand, sometimes if you’re feeling ill, it is easier to stay at home in your pajamas then have to go to someone else’s place. My best advice would be to offer both options and let the person with a chronic illness choose what works best for them without any guilt or pressure added. Offering to accompany someone with a chronic illness to an upcoming appointment is another thoughtful way to show support. If you know they’re having surgery or some sort of treatment that’s going to make it harder for them to get around for a while, offering to bring food or help out in other ways is very kind. If they have young children, an offer to babysit or pick kids up from school may be a good way to show support.
7. Check in. One thing you learn pretty early on in the chronic illness fight is that a lot of times, people around you don’t really want to hear about it. After all, when someone says, “Hi, how are you doing?” they are probably hoping you will just say, “Fine.” When someone answers with, “Not great. I have been pretty sick lately,” people don’t always know how to respond and may even respond with a comment that is taken as insensitive or uncaring. For this reason, people with chronic illness may keep their pain both physically and mentally to themselves, adding to the isolation of living with chronic illness. Taking the time to send a quick text that says, “Thinking of you” or “How are you feeling this week?” can mean a lot. If you know somebody has an important medical test or surgery coming up, take a moment to jot down a reminder in your phone so you can check on them that day and see how it went or give them positive wishes beforehand. Also, remember most chronic illnesses are not going to just go away, so continue to check in over time, reminding them you have not forgotten they may be struggling.
8. Only offer support you know you can give. I have mentioned several ways to show support above. When offering support, try to think of something specific and helpful you know you could and would really do. Do not make offers you don’t really mean. I think a lot of times people offer “empty support” in an attempt to make themselves feel like they are being supportive. It is really easy to say, “Let me know if you need anything,” but ask yourself, what do you really mean by that? Of course everyone is busy with things going on in their own lives, and people with chronic illness really do understand that. Remember that even the smallest, simplest gesture can mean a lot, though.
9. Some comments can be hurtful. Be thoughtful in what you say: many times comments are not made to be hurtful, but we still interpret them that way. The most infamous comment is, “You don’t look sick.” I think those saying that probably mean it as a compliment actually, but many people with chronic illness feel that comment means you don’t believe they are sick and it invalidates the agony they go through. Some other comments I have heard include:
“You’re too young to have that much wrong with you.”
“Why would you want to put your body through that?”
“You have ____? Oh yikes, that’s bad.”
Those are just a couple of examples. There have been many more. The one that will forever stand out for me was, “How long do they think you’re gonna live? Your disease is fatal. You know that, right?” I was at a dentist appointment when the dentist said this to me. I was in shock. All I wanted to do was tell him off and leave but it was right in the middle of a procedure so I politely explained that my disease was not necessarily fatal. The symptoms can be but I planned to be around a very long time. I got through the appointment, cried on the way home and, of course, never went back to that dentist again.
10. Forgive our bad days. Being in chronic pain, especially with little sleep, would make anyone cranky. If we seem a little on edge some days, please be understanding. I am very lucky to have someone in my life who truly is there in sickness and in health, in good and in bad. For the most part you will find me smiling, but there are some days when I have just had enough, and that’s OK. Also remember that laughter is the best medicine. There is not a day that goes by that I do not laugh. My S.O. and kids make me laugh all the time and it really does keep me going.
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