A few weeks ago, I wrote a post about 15 Things Not to Say to Someone With a Chronic Illness. It has been by far the most popular post on my site. I am so glad that it has resonated with people, and hopefully a few people learned how to better relate to people in their lives with chronic illnesses.
A few people have mentioned to me that I should write about what people should say to people with chronic illnesses. So I can’t guarantee this list will apply to everyone, but here are 10 things that people with chronic illnesses want to hear:
1. I believe you
I already mentioned that this is the most powerful thing you can say to someone with a chronic illness. People who live with chronic illnesses are often met with doubt. Seeing is believing, and when you look outwardly healthy, people have a hard time believing you feel as sick as you say. For a person with a chronic illness, having someone believe them is validating and comforting. It will help them trust you because they are probably worried about whether you and the people in their life believe them or not all the time.
2. Can I come over and hang out?
Asking them if they want to come and hang out can be good too, but sometimes just the thought of leaving the house can be overwhelming for someone with a chronic illness. It takes up valuable energy- leaving little to do the fun activities that they were planning to do outside the home. You offering to come over is a huge gesture. It shows that you want to spend time with them, even if they aren’t up for leaving the house or doing something that takes energy.
From the Facebook group, You Know You Have EDS When
3. Can I bring you food? or, Can I come over and help out around the house?
Obviously these aren’t things you should say or do all the time, because you probably don’t have time to do this every day. But on a day that you have time, or if you are already running errands for yourself, taking the extra few minutes to help your friend with a chronic illness will make a huge difference for them. For me, sometimes just doing the dishes is enough to make me need to take a nap. And on bad days I struggle to find the energy to get food. Offering to do these favors, whether or not they accept, is a wonderful gesture. It will help someone with a chronic illness feel that you understand what they are going through and care about them. Offering something specific is more helpful than just asking, is there anything I can do? (Not that that isn’t good to say as well!)
4. I know how hard you are trying
This is the opposite of “why don’t you just push through it?” and it is one of the best things you can say. Everyone likes their hard work acknowledged, but most people don’t see just making it through the day as hard work. For someone with a chronic illness a lot of times it really can be. And when I am working really hard just to make myself exercise for 10 minutes or do my biofeedback for the day, that outside encouragement can be the motivation to help get through it.
5. Any kind of hello or checking in after not seeing them for a while
Sometimes someone with a chronic illness doesn’t leave the house for a long time, or misses a lot of school or work. And adding to the difficult of their illness is the feeling of being forgotten or left behind. Out of sight, out of mind, right? So just checking in and saying hi and letting them know you’ve been thinking about them when you haven’t seen them around lately will go a really long way. It will probably make their day, and you will feel good for reaching out to them.
6. You are so strong
Constantly being in a fight with your own body is hard work. People with chronic illnesses usually feel weak from this fight, either physically, mentally, or both. Hearing that they are strong is validation that all their hard work is not unseen. And it can serve as a reminder that they have the strength to keep fighting day in and out.
7. I know how hard this was for you- thanks for using your energy to spend time with me
A friend of mine mentioned that her friend once said this to her after a long phone conversation. I realized how touched I would be if someone said this to me. Saying this helps a person with a chronic illness feel that you understand what they are going through and appreciate having them in your life. It also should make you feel good that someone with a chronic illness chooses to spend their limited energy with you, because it means they care about you!
8. Don’t feel bad if you have to cancel plans at the last minute, I understand
One of the constant feelings that comes along with a chronic illness is feeling guilty or like you are a burden to people in your life. I always feel terrible for canceling plans, and I sometimes do it at the latest possible moment because I am hoping I will feel better. And I sometimes beat myself up about it, even though it’s out of my control. I know this is common for people with chronic illnesses. Letting them know you don’t hold it against them will help alleviate that guilt. And it will make them more likely to make plans with you in the future, because they won’t be afraid of losing you as a friend if they cancel on you too often.
9. Sometimes the best thing you can say is nothing- just a hug or lending an ear
This is true of all people, right? Not just those with chronic illnesses. Sometimes the best, most supportive thing you can do for a friend or loved one is just show your support through a loving hug or letting them vent to you. Hugs are good for your health, so go hug your friends who have chronic illnesses. Usually just being a good listener is more helpful than trying to give good advice when you haven’t experienced chronic illness first hand.
10. I know this isn’t your fault
One of the main themes running through a chronic illness sufferers head is often self-blame. Which is totally unreasonable for most people. But it’s hard not to think, “If I only pushed myself a little harder” or “If I only ate a little healthier” or “If I only exercised for 20 minutes yesterday instead of 10 I would be better.” People with chronic illnesses learn from experience that these “if only’s” are just wishful thinking. Because the illness is not your fault. And so having an external reminder of that fact can really help solidify that idea for people with chronic illnesses, and help them remember that you don’t blame them for it either.
BONUS: When all else fails and you aren’t sure what to say: I wish I knew what to say, but I care about you and I’m here for you
You may never understand what it is like to have a chronic illness, and that is ok. That’s actually good, because it’s not usually a fun experience. But when you can’t think of what to say, it’s ok to say you don’t know what to say. And follow it up with a reminder that you care about them and you are there for them if they need you. Because when it comes down to it, it’s not about saying the absolute perfect thing, it’s about showing that you care.
This list is not meant to imply that these are the ONLY things you should say to someone with a chronic illness. All of these things should get through to someone with a chronic illness and be touching for them, depending on who the person is. Having a good support system is important no matter what situation you are in, and so these kinds of things let the person in your life with a chronic illness know you are on their team.
And if there are more things you wish people would say to you as a chronic illness sufferer- feel free to leave them in the comments!
Don’t forget to check out 15 Things Not to Say to Someone With a Chronic Illness!
And on the lighter side of things… Chronic Illness Humor.
Thank you so much to Shira Azaraf, Julie Davis Godnik, Jodi Collicot-Hartzell, Stefanie Shea, and everyone else who helped me come up with this list!
Rebecca Hare Lehman says
I love this. What not to say is sometimes so much easier to explain to people than what TO say.
Gina says
Hi Susie, It can be really hard having a chronic illness, you feel so alone sometimes. There are so many days when you feel like you get nothing done. I get chronic migraines and have fibromyalgia, sjogrens syndrome and chronic fatigue and people are always telling me to see another doctor or try this or find my trigger foods which I don’t have. Weather is a factor for me too which we can’t control is is so frustrating, I often feel in a fog and my whole body hurts sometimes and I can relate to the procrastination of, “is this a bad enough migraine to take my medication days”,..because you are limited to 4 days per week. So frustrating. Why should we suffer on any given day. Then the side effects of the meds is another story. I feel for you dear. I will keep you in my prayers. Stay strong and thanks for sharing your story!
betty says
Such super good suggestions, Susie. I hope lots of people read your blog and remember your suggestions. Love you SO much, Bubby.
Trish Burger says
I relate to every single word of this! I couldn’t have said it better myself. I feel a little less crazy because of this. I have Diabetes and a condition called Gastroparesis both ‘invisible’ illnesses. The few friends I have I love dearly and thank them every time we have contact. They may never understand that devotion on my part because I am thankful for the moments of feeling ‘good and healthy’ no matter how small. Thank you Susie!
ashley luten says
Thank u so much. More than u will ever know. I have parents,mostly my mom, who is the queen of the “what NOT to say list. No matter how much I try to help her understand Fibro , the person I need most in the world never is. I love u for posting these things and God Bless you
Ashley
koi says
Same here. It’s as if my mom doesn’t care. Sometimes I actually think she doesn’t.
Beth says
This is excellent! I’d seen others on what “not to say” but this is far more effective in its positivity and encouragement – thanks! You said it well – even things I hadn’t thought of in my life with multiple chronic illnesses which can be invisible (except for those pesky canes, braces, and/or wheelchair on occasion). The “‘I’m here for you” is such a gift when said and demonstrated especially in the little often-overlooked ways of asking “may I carry that for you?” or a text with a hug and smiley face…
Sharon Fillner says
Love this one too!! Especially the I am just checking on you, and the hugs!!
Greg says
I have hemochromatosis and nobody gets it. Sometimes I just don’t feel good. It’s not a physical disability like being blind or having to walk with crutches or something. But it landed me in the hospital for a month and I had to walk with a cane for several months after. I hate it. I feel guilty all the time like I did something wrong.
Agnes says
I have that too in addition to other illnesses. Some people just don’t want to understand that we can go from feeling ok to being unable to move because of pain in a short time.
Laura says
Greg, my brother has hemochromatosis too. I have a chronic illness. When he started having severe fatigue and other physical manifestations, he was so much more able to understand what I was feeling. I hate that he understands. But it really has brought us even closer together.
I’m sorry you are dealing with its effects. Invisible illnesses are so difficult for others to understand.
I love these two articles, Susie. Thank you for writing and sharing them.
Susie says
Thank you!
Janeal says
I wish I had seen this years ago! My lovely daughter suffers from a variety of invisible illnesses. All her friends and family need to read these! Thanks for sharing.
sophi says
as if friends stick around for long if you got a chronic illness…. mostly you can expect maybe each of these once…. but after that you’re expecting too much and they’re all just gonna abandon you. it’s just as well to never have friends or to just set them all on fire. it’s not like any of them every cared about you anyways. you can tell because the only way they’ll ever pay any attention to you is when you throw fits and use emotional blackmail to guilt them into paying attention.
Torn Discs says
I’m sorry you’ve gone through such experiences to feel that way :( Hopefully losing those “friends” was just making room for some people who are really worth the title of friend.
Terri Baker says
How very sad that you feel this way – my hope for you is that you will indeed find at least one or two “true” friends who are worthy of the title “friend”. Perhaps you can connect with a few people on the RA sites for a while – even if these are not close in location to you – they are many times very wonderful friendships because we understand and can offer hope, encouragement, a “shoulder” to cry on or vent to, and someone to share lifes happy and sad times with. Please dont give up on ever finding good people worthy of being called “friend”!!
Anna says
I lost a lot of friends too, as well as having to move interstate because my parents have to help look after me and I can no longer afford to live on my own. Makes me sad to think I spent so much time and effort with this one “friend”, that in the end it turned into nothing. It makes me not ever want to trust “friends” again. And perhaps its me, but then I won’t try to make real friends ever again if that’s the case.
Stephanie says
This was really good. Thank you.
Sarah says
Thank you so much for writing this list! It puts together everything that I’ve been trying to share for a long time!
Michelle says
This is so true– all of it. Being heard, believed and having people who at least try to take the time to understand what it’s like is invaluable!!
Ruth says
Yes, this is very good stuff. :)
I think I would like to add one; I guess it’s kind of similar to the one about cancelling at the last moment.
It’s lovely when people invite you to things, or ask to come over and visit. But if they were to add: “But if you can’t, it’s absolutely fine,” that would help me a lot, because otherwise, I immediately start feeling that I OUGHT to be able to do it, and guilting out if I can’t. :/ Despite my best efforts, I feel guilty when I have to say “no” to people, especially when they are just trying to do something nice for me.
I am blessed to have some kind friends who already do this. :) But if everybody did it, that would be wonderful! :D
Hayley Baxter says
what a great list. For me friends have been great, but finding a partner who understands this illness is a real difficulty. I would have loved to hear some of these things from my ex-husband or people I’ve dated instead of having long explanatory conversations about how the disease works. The top one ‘i believe you’ would have been a great thing to hear sometimes because even if you don’t understand, you can believe someone. Great stuff.
K`shandra says
#6 really depends upon the person, IMO&E. My husband (a cancer and stroke survivor, who deals with the aftereffects of both of these on a daily basis) gets so. very. frustrated. when people tell him how strong he is, or how brave he is. But the rest of these are awesome, and thank you for compiling the list.
Adrian Tremayne says
Me too.
Faith says
Manic depression counts, right?
I deal with it on a daily basis way too much as of late, and at times I can barely even get up or breathe properly because of how overwhelmingly sad I get. It then turns into a laughing fit or a mood where I want nothing to do with you.
Something to add on the list: Make that person feel special with small gestures you know they would appreciate. If they like writing? A new notebook they’ve been eying. A chocolate lover? A snack from their local chocolate shop (or their favorite candy if no shop is in your ares). I cannot tell you how many times I feel uncared for unloved, and its this kind of thing which makes a day better.
Another: Don’t abandon them like everyone else. When you loose someone you believe with your heart that cares for you and they dont return this is probably the worse thing one can ever do. It gives you all these feelings that someone cares and lets you be safe around them. When thats gone, its as if the entire world has shattered. Dont do that to someone who does not need any more pain in their life.
Jenn says
This made me tear up a little. Thank you. It would be nice to hear one of those things you’ve listed. Even just once.
Name withheld says
Wow. I Just burst into tears reading these comments, especially this one. Understanding the heart wrenching emptiness in most of these comments, makes me realize I’m actually in the same position and feel the same way. Most of the time, those with chronic pain spend so much energy minimizing or stuffing down how we feel on an hourly basis, that we lose connection with how we actually DO feel. Our lives and feelings are a constant cover up to even have any relationships, at all.
And although I feel devastated all over again because I tragically can relate, ironically, it makes the burden seem lighter and less sad because I’m NOT the only one going through this life sadness.
To all who have commented, THANK YOU for being honest and using your voice: you have miraculously made it acceptable for other to use their honestly and their voices too.
THANK YOU!!!!
Hannah Eddy says
This literally brought me to tears! I have a very good friend who has Lyme disease. She is also a very established blogger. She has been living with it since before I knew her. We are like sisters though and recently I was thinking about this topic, “Have I ever said anything that has upset her without knowing it? How do I know what is the right thing to say?” I can’t imagine what she is going through and she is the strongest women I know. I try to treat her as I would any of my “normal” friends, but at the same time still try to acknowledge she is dealing with this illness because I don’t want her efforts in fighting to go unnoticed. So thank you so much for writing this and giving me more a much better idea of how to encourage her and support her!!
Becky Kuehn says
Thank you for a much needed article and you said it in such wonderful way!
TC Smith says
Thank you! These are great! The only thing I would add though, on #9, be careful with hugs. Some with chronic pain can only take gentle hugs. Asking first so the person can avoid more pain would be appreciated.
Karina J says
wow this is amazing. I can really relate to this! I am currently supporting my fiancé through an illness that has not yet been diagnosed but we know he has BPD it’s him to a T. Doctors and psychiatrists just hate diagnosing it but after 6 years of fighting it from a bad past we have to be getting close to some kind of diagnosis, right? I hope so anyway for his sake :(
Anna says
Agree with everything, except #6. I hate, HATE to be told how “strong” or “brave” I am; otherwise, great list!
Adrian Tremayne says
Agree with you 100%
Cindy Stambaugh says
You know my dr. told me once that I have a chronic illness which means a lifetime illness or so he said. He stated that you were born with it, you will die with it BUT it will not kill you. This is such a great article and I just hope it makes others understand our hidden illnesses for they more often than not think that we are faking our illnesses. I used to be very active, go out, get involved and now I could care less about getting dressed even. Dropped out of social activities, only attend if I have to. I hope people take heed to your article.
HB Story says
I absolutely loved this list!
It do prefer to be asked before someone hugs me as sometimes I need to specify “gentle hugs.” I would love to hear almost everything on this list, thank you so much for compiling this and sharing it with us!
Courtney says
I want to thank you profusely for this list! I have seen several “what not to say” lists, but this is a really well done “what to say” list. I have Complex Regional Pain Syndrome (CRPS), Lupus, and Fibro. This list really spoke to me. It would really touch me if a loved one said any one of these things to me. In fact there are a few items on the list I REALLY need to hear from some people in my life. I’m going to share this with some people in hopes they pick up the implied hint.
Yessi says
I have a thing for that puppy hug picture, too.
This post has genuine experience behind it. It’s easy to say “let me know if there is anything I can do” because it is so ambiguous that it almost seems rude to take people up on this offer, but it seems to be a big thing to say (at least from my experience).
That said, it’s hard to hold it against people. When they haven’t experienced it themselves, they just don’t understand. This is history repeating itself in another shape and form. 100 years ago gay marriage seemed ludicrous to the mainstream person. Now gay marriage is normal but non-monogamy is ludicrous to the mainstream person. Cancer and depression used to be hush-hush, and now talking about them is encouraged. But chronic illness is still hard to talk about. I don’t think it will be for long, considering how many people are becoming chronically ill.
What chronically ill people should be talking about more is how we got this way to begin with, through our genetics and environment and how we handle the cards we’ve been dealt better. There are a lot of role-models out there that we can get out motivation from, instead of the mainstream people who don’t get it.
Cheryl says
thank you for such a well-thought out piece that answers the question that i think is left in people’s heads after the “don’t say” lists (which are also important!). i try to tell my husband and other loved ones that i don’t expect them to ever fully understand my world, they can’t but I’d still love their support as i journey through it.
Marilynn says
Thanks for this great list. You did a good thing by writing it. I always want to know what will be the best things to do and say to help a friend. I’ve even printed your list so I’ll see it more often.
koi says
Thank you for this and the other list. Those who have it “understand” while those who don’t, really don’t care if you are going through it. Those I thought would care the most because they’re suppose to be family, actually cares the least. They just tell me to stop pitying myself and to suck it up. So I’ve learned to keep my mouth shut. They are the ones I least tell my problems to.
Jeannie says
I could have written this! I am grateful my son (now 13) still a compassionate, loving person. My mother who is now 77 (cannot help me with anything) feels for me as far as being sick along with my sister in law who my mother lives with (she is a caregiver as a precession…perfect for my mom since I live two states away.) And a friend since our teens, we are now 50, who does care and does try, can catch herself at times realizing she does not understand. Otherwise, I was very social but slowly as I got sicker (had no idea was sick as I am) slowly harder to socialize. My soon to be ex is such an uncompassionate person I know I have ptsd from his “helpful” actions and energy. My own brother, whom is now well off with wife & child, would not even be in that position if I had not pulled him out of serious drug use besides talking him out of suicide and just sticking up for him as a kid….but now I am of no use to him.
Shelby says
This article is wonderful and so true. Thank you for writing this!
jo-jo says
I don’t agree – what about people you know who are faking illness?
Susie says
I normally don’t chime in here but I just want to say that you should be careful thinking someone is faking an illness- it happens less than you think. And when it does happen much of the time that person suffers from a chronic illness that just happens to be a mental illness.
Abigail says
Great list! But I actually hate when people tell me how strong I am. I guess I don’t mind it as much from people I’m close to. But in general, it feels like a distancing technique. It’s a way to make us “other” — someone stronger and better than they are. If we’re so different, they’re somehow safer from the vagaries of life that afflict us.
Krista Faw says
Thank you for this list…it’s very spot on!
Bonnie says
Mental illness is so hard for people to understand unless you are seriously disturbed and it is noticeable. Only when admitted to the hospital and people ask where you are does it become real. Otherwise you are constantly fighting a battle within yourself and have to put on a happy face and deal with, “Here she goes, cancelling again.” The amount of meds that have to be taken just to function normally is rough and unless you explain in full your battle to people, they will never understand. I have a friend who battles a few invisible illnesses and I lover her very much and am there for her whenever she needs me. So, physical or mental, when illness is invisible, it is tough and this article is great. Thank you so much for posting this. Love to all of you and may your battles become easier.
Adrian Tremayne says
While I agree with most of this, #6 “You’re so strong” sets my teeth on edge. OBVIOUSLY I’m strong, I’m not dead. When people say this to me, I feel as if they’re saying I’m not working to my best capability at the time – that I’m shirking and blaming my illness for laziness, or just not wanting to do something. It FEELS sarcastic. I know what being strong means, I used to BE strong. And I know I’m not now. People saying”you’re so strong” usually ends up with me pushing myself past all sane limits, and ending up in bed for 2 or 3 days recovering. I don’t know how many other people with chronic illnesses, or disabilities due to other causes, feel this way, but many of those I’ve spoken with have expresses the same, or similar reactions. Please don’t say “you’re so strong” without a qualifier of some sort. I’m usually defensive to start with if I’m doing something I feel like I should be able to do without all the trouble I’m having, so I jump to the worst conclusions as to what the person really means.
Mary says
I really appreciate you sharing this. It’s very helpful.
Mary
Denise says
#2 Is more difficult than you can imagine because now it means I have to clean me up & the house to have you visit plus a snack or lunch. That would give me a panic attack and more than I could handle. Much better to have me visit you or meet & have lunch at a GF restaurant. Middle of the day is usually best as mornings can be awful from a rough night & by nighttime you are just exhausted. Am I alone in this?
Name withheld says
Nope, in fact you’re EXACTLY right. Thanks for saying it!!
Mary says
I put a longer comment on here. What happened to it. Is it being moderated and will put on later?
Susie says
Hi Mary, Sometimes I am a bit slow to moderate comments or they get lost in my spam filter! I check spam for comments from time to time but the volume of spam comments is so great it’s hard to weed out the real ones. Sorry if it got lost in spam!
Diane says
Thank you for putting this “out there.’ Most with a chronic illness are either too tired to say/write it or busy using all the energy they have just to work/live/go on etc., myself included.
Very thoughtful and on the mark – same for “What NOT to say…”
– 58 year old female with cystic fibrosis (keep it hidden for the most part)