I write this article from a mostly, comical point of view...yet hopefully also informative. I found along the way that there are some wonderfully, comforting words and gestures that can help tremendously in the face of desperation. I've also found, in reading books and on the internet, that there are a few 'never say' phrases that are cringe worthy to the chronically ill. Your encounter alone could be the patients' "make or break" for that day!
I've had many people over the years ask how they could be a better friend to me in my new life, and what things I liked or did not like. There have been some comical moments, a few 'what were they thinking' moments, and some amazing blessings and small acts of kindness. I personally, have been beyond BLESSED by having some wonderful people who dared to go on this journey with me.... both of us not knowing the 'right way' all the time....but willing to take a shot at it!
1) You don't look sick......you look great....or you look terrible:
While none of those comments are probably ever meant in a negative way, they can easily become a hot button issue on any given day. First, someone who has literally just been to hell and back doesn't want to hear that you are unable to 'understand' their pain because you cannot see the soul ripping effects of their illness. What's happening inside the body doesn't often manifest outwardly, and pointing out the lack of evidence of illness can seem to minimize what someone is or has gone through. In the same tune, telling a person how awful they look can only remind them that their disease is getting the best of them. If they are like me, vanity doesn't die hard.
What you can say: Try to avoid comments on appearance. We already know the good, the bad, and the ugly. If you must, try something that no disease can rob them of for example: 'I can still see that twinkle in your eye that I've always loved about you'
2) You're lucky:
Yes, I actually have had a few people say this to me! One person even needed to elaborate on how they would give anything in the world to be able to lie around all day in bed and watch tv. Another Einstein told me how great it must be to have someone wait on me hand and foot and do my housework. While I wanted to scream: "Are you freakin' kidding me?", I realized these poor dear ones had absolutely no concept of what I was actually going through. I could only say that I hope they never, ever get the chance to live our their fantasy in this a cruel way!
What you can say: Just don't go there! :)
3) Let me know if there is anything I can do to help:
I think everyone must get this memo as the perfect one liner to say to someone who is sick. We all know it's a cliche meant to appease a guilty conscious or appear to want to put forth an effort. If you really did want to help, you would find a way! If you are watching someone die or become very sick, you can easily see the plethora of needs. There are about 100 things you could always do to help if you really wanted to actually be a blessing. Don't offer unless you have a plan. Someone who is very sick doesn't want to be a burden, and this statement just "puts the burden back" on the patient.
On one occasion a lady came up to me and said: "I don't cook, I don't like to cook, and it's a blessing to you that I'm not cooking for you...but if there is ever anything else you might need, just let me know."......chuckle chuckle!
What you can say: I'd like to bring your family a meal, would Friday or Saturday work best? I'd love to take the kids off your hands for a bit, does Tuesday work? We're coming over to cut the grass for the family, do you prefer weekends or week days.
4) My thoughts and Prayers are with you.
Guilty! I'm guilty of this, too! However, lesson-learned! It's very sweet to think or pray for someone, but 99.9% of the time, this is another 'feel good comment'. I can say I've probably heard this about 4,592 this year alone. Ok, so maybe not that many, but probably pretty close. It's the 'go to' sick comment, and in the world of Facebook, I've found myself using it quite a bit. Let's keep it in Facebook world, and not in the real world!
What you can say: "You were on my mind all day today. I spent some time in prayer for you and your family this week. How can I pray for you?"
5) How are you?
In my personal situation, this will never have a good answer. I'm sick 24-7. I don't want my illness to define me, but this question pretty much can only sum up that I'm not well. Also, I feel it's asked out of obligation, like every conversation must somehow revolve around the fact that I am indeed sick. Also, how many people really want to know how you are doing....all the ends and outs.
What you can say: "How are you, today? or What were the bright spots of your day? or What exactly are you feeling"
6) I have this great herbal remedy that could cure your incurable disease! Have you tried the natural remedies I told you about yet? You should ditch your doctor and medicines for only all natural foods and vitamins.
While I read about this being a faux pa of things to say to terminally ill patients, I must say it's probably one of my least favorite things I hear. If only you knew to what lengths someone would go to find a cure for their disease. I'm positive the very sick have already researched everything there is out there on the market or popular old wives tales. Your 'extra secret mystery herbal remedy' is so secretive that even the best doctors and researchers in the world have not been informed about its magical powers....you better run right out and buy some stock for it asap. It's best to keep this type of unsolicited advice under wraps.
What you can say: The majority of very sick people are not asking lay people for their medical advice. Unless you are specifically asked or have had their exact illness, keep the potions in the cabinet.
7) Please tell me what the doctors say or your test results.
Not every patient is private. I am a big talker and don't mind sharing some information. However, let that be my choice of what, where, and when, and how I want to share it. After I got some very difficult news, I needed some time to process what I had just been told. For me, this took almost a month before I was ready to make it 'Facebook knowledge'. It needs to be on the patients terms. If we want you to know, we will tell you.
What you can say: Just don't ask. We will let you know when and if we are ready.
8) If you just had more faith (or other things), you would be healed.
As a person who believes in God, has faith, and is known to be a Christian, and a former missionary, I've found myself surrounded by the 'well-meaning,' Bible toting, scripture quoting, religious population. While I appreciate any and all prayers being lifted up for me and my family, the very last thing I need is to hear your personal opinions on MY God journey, my Christianity, or my lack of faith. We all have different views or different interpretations of the Bible. If for one second you could put yourself in my shoes, you would probably surmise the immense internal struggle for answers that exists day in and day out in my world. The 'WHY' can be so overwhelming at times. Bad things do happen to good people, and I must wrestle every day with the fact that I'm living a nightmare and how that may effect my own relationship with my God. All the unsolicited religious rebuking is being done by someone who hasn't walked even one step in the shoes that I've walked miles. This is one venue where I've had some really funny comments. Oh, the things people take the liberty to say in the name of God. One sweet lady even told me how disappointed she was in me that I didn't have enough faith to be healed. That doesn't HELP! I actually love knowing that I'm being prayed for and that there are Christians who will take time out of their busy lives and schedules to care enough about me and my family to ask my God to intervene. However, that's where the line has to be drawn. And please, never, ever say "God only gives us as much as we can handle"......
What you can say or do: Words, sayings, or phrases of encouragements, favorite scriptures that have helped you get over tough times, inspirational music-cds, a daily devotional book, silent prayers, joyful encouragement, or a 'you're not alone' card or note.
9) I miss the 'old' _____________
If you miss the old person or the good 'ole days, we are probably missing them 100 times more! We are aware of the loss in our lives and sometimes even more aware of how our illness has changed others' lives. The guilt that can go along with chronic illness can be daunting, to say the least! Reminding us that we were once a better friend, better family member, better person, better, better, better.....can easily add to the burden that we have already put upon ourselves. Try not to remind us that we've created a void in your life with statements such as these.
What you can say: Find something 'new' that the sick person has done or become that you like about them NOW! or Tell them how they may have spoken in your life one day that they were unaware.
10) Everything will be alright. You are not going to die. You will beat this. God will heal you.
Truth is, nobody knows! You don't know what God has planned for me or anyone. I don't know what the future holds. However, as part of my journey, acceptance is a very key role in being able to cope with a degenerative disease. Remember that acceptance doesn't mean giving up. Those that know me well, know that I'm fighting .....and fighting hard like in 'cue the music in the Rocky movie' kind of fighting. However, in this process, I've had to come to grips with the fact that I'm am sick, everything isn't alright, I will probably die long before I had planned, and this disease isn't curable. Does this mean I'm saying all hope of a chance of getting better is gone? Not at all! However, it would eat me alive if I got up every morning confused as to why I was still sick, if I hadn't allowed acceptance to come in as an important coping mechanism.
What you can say: "I'm in your corner, I'm rooting for you, I want to walk with you during this fight" or something like: "We don't know what the future holds, but I'm glad you're here now, and I thank God for every day He gives us".
11) I can relate.........or .......complaining about your minor medical issues.
Now, if I told you that someone once shared a story with me about a toe fungus and how they could relate to my disease, you'd probably think I was joking...I'm NOT! I've been told stories of the flu, aches and pains, minor illness, and even sleepless nights. I know it's important for people to try to learn how to relate to someone else's pain. I am not a sensitive person, so I totally get it.....and I understand it's our human attempt to try to have empathy. I know before I became sick, I probably couldn't even relate for a second to severe chronic illness. Unless we've walked in those shoes, we cannot relate! Also, if you are aware of the 'life' and burden this person must bear physically, probably hearing you complain about your 2-3 day flu isn't going to go over very well. I've likened my illness to someone having the worst flu of their life, chest pain, difficulty breathing, severe pain all over the body, and being on a twirly-wirly all the time. Except, while your flu goes away after a week, I never, ever have an end to my pain or "flu." While not everyone who is as sick as I am will feel the same, so I won't speak for them all...but for me, I find it very difficult to try to be empathetic to aches and pains at this point. Not being terribly empathetic about aches and pains, doesn't remove my ability to genuinely care for and about people.
What you can say: "I cannot imagine what you are going through."
12) When you get better, we will have to go do this or that
This comment would really only apply to the terminally ill or those with a degenerative illness. The reality of what the future doesn't hold is a hard pill to swallow. We've already played out the scenarios of what we will miss out in life, and don't need a constant reminder of the things we will never be able to do again or do in the first place. Of course, that's a great chance to make new memories of things we CAN still do! For me, I will never travel again, care for my family, or play tennis...but what CAN I still do...that's the key!
What you can say or do: Grab a bottle of wine and a great movies and plan a girl's night IN. Have a Christmas wrapping party. Make a chocolate tasting contest. Be creative. Make new memories...find the "can dos"!
13) Let me know when you are ready for me to leave!
Now, if your momma was anything like mine, she taught you some manners! And even amongst the sick, those manners are still very much in tack. One of the hardest things for someone who is sick to say is: "Please leave". It's an awkward situation and any sweet southern girl will find it difficult to say such things. It's best not to put the patient in that situation.
What you can say or do: Don't ever show up unannounced. If someone is severely ill, you never, ever know what's happening in that moment. Even the kindest of people would find it hard to turn away a visitor. Depending on the pain or the physical strain on the patient, most would recommend no more than a 15 minute visit. Someone once said: "I'll let you get some rest" after a quick visit...and it was music to my ears. As much as I loved seeing them, I was worn out and exhausted.
14) Focusing only on the illness.
For a few months, when things had gotten really scary for me and we weren't sure if my time was up, I realized that no one ever talked to me about anything else except for my illness. I had ultimately become defined by the one thing that had already robbed me of my life, now it had become my life. If people would call or text or visit...the one and only conversation was SICKNESS! But I was so much more than that! I still was a person...I still had dreams, desires, wisdom, stories, and a little bit of life left in me and I was forced into a box. I grew tired of talking about how I was feeling....how I was coping...how I was managing. I wanted to hear about the latest happenings in town, what new movies were coming out, or even a funny story or two.
What can you say: Follow MY lead! Somedays I need to talk about how I feel. Somedays I need you to know I'm hurting both physically and mentally. However, somedays, I just need to be ME...somedays I just need to talk about something else other than my illness!
15) I haven't been in touch because I wanted to give you your space.
There are lots of creative, thoughtful ways to let someone know you are thinking of them without getting in 'their space'. Unless we asked for this space, a friend would want to be there through thick and thin. If you don't know how to do that, take little baby steps. I've expressed before, even the smallest acts of love can go a long-long way. Don't be scared, you can't catch it!
What you can say or do: Most likely this is because YOU are uncomfortable. If that's the case, send little notes in the mail, bake a batch of cookies, or mail them your favorite 'go to' movie. It's really easy to keep in touch in small non-intrusive ways!
Thanks for that post. It is very helpful.
ReplyDeleteI hope you are having a good day today.
Well said my dear..thank you for the insight! Always I am praying for a Miracle Healing for you! Love you!
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