Friday, February 09, 2007
Handling a friend's diagnosis
Sitting on my desk is a get-well card. It's addressed and stamped, but the inside is blank. A woman I know recently learned she has cancer. She's not a close friend, but her gentle spirit and beautiful smile always have touched me. I want her to know that if she needs anything, I am her girl, but I don't want to appear too nosy. I also want to be optimistic, yet I don't want to come off as a "Pollyanna." After all, cancer is serious business.

Not exactly sure what to do, I called Christine Miserandino. She is the founder of butyoudontlooksick.com. Christine has lupus and she talks with other seriously ill people all the time. "People get weird," says Christine. "Often they think you don't want to do the same things you did before, like get your nails done or go to the movies... but as I remind people, it's the same me." Christine also offers these suggestions:

1) Forget the flowers - think more practical. "What girl doesn't love flowers?" says Christine. But after a while, the house or hospital room may start looking like a mortuary. Christine suggests buying a gift certificate for something your friend needs, like a maid or grocery-delivery service. Remember when people are sick, energy is low and money is often tight.

2) When visiting, come prepared. Boredom is often a side effect of illness. When visiting, bring something you can do together, like a movie or a game. Christine says she started making scrapbooks and it was a great way to think about happy times.

3) Do your research. Find out whether your friend is on a special diet or is craving a special treat. Also some hospitals don't allow balloons or flowers. Some treatments can also mess with the sense of smell, so before you invest in bath supplies or candles, ask.

4) Call Ahead. Know your friend's schedule, when he or she gets treatment or is sleeping. Also, even if you have made plans, call an hour before, to make sure they are still up for a visit.

5) Get real. When Christine's lupus was diagnosed, it drove her crazy how some people would pussy foot around the diagnosis. "Don't tell me I will feel better. I might not." Christine has a wicked sense of humor, so she designed a shirt with the words "Lupus Sucks." That shirt, she says, built bridges with her lupus brethren and broke the ice with countless other people.

That card is still sitting on my desk, but I now know what I will write.

What are some things you do to support someone who is seriously ill? Have you ever been annoyed by a well-meaning friend when you were sick?
I always think a book is a solution to almost everything, so I would suggest bringing a book of humor (or tapes or CDs and inexpensive cassette or CD player if the person is not in a position to read). Erma Bombeck, Penauts, Garfield, James Thurber or EB White are all gently encouraging views of life as we live it. Norman Cousins wrote a book about humor as an assistance to healing: Anatomy of An Illness as viewed by the Patient.
He famously designed his own humor cure when diagnosed with a serious illness by checking out of the hospital, into a hotel, and bringing in a host of comedy tapes, books, and friends to encourage his healing.

I have occasion to visit some of the shut-ins from our church, and the advice we have been given, is to listen to the person. I think our biggest problem is worrying about what we are going to say, when instead our mere presence can really be the comfort. With family members, especially if they are approaching death, being open to listen to what they have to say, even if painful to hear, can be liberating to the loneliness they are facing.
This is some great advice, we often don't know what to say to people who are sick, you don't want to just bring the bag of grapes and bunch of flowers and sit there feeling awkward. Thanks for helping out, i know what to do next time.

Christine what a wonderful site! I love it. Thankyou
Christine's words are so true. As someone with lupus, I know firsthand, you may not get well and LUPUS DOES SUCK!!!!!
Great Article! I have one of Christine's shirts and I wear it to the doctor's office!

I wear the Hug me! I am not contagious! shirt- it always get's a laugh and puts people at ease to start acting "normal" again.
http://www.cafepress.com/bydls/2136467
Nice blog! Yay Christine!
I totally understand what Christine means.. I have lupus too and sometimes its like people automatically assume you arent the same person.
This site is wonderful! It empowers people that feel infinitely helpless because of the blow they have taken to their lives. We all know about these illnesses but we tend to think it can't happen to us of the ones we love. Thank you Christine for creating a site that help those with a disease and those who love them cope and go on with living.
I've just been diagnosed with breast cancer, but don't have the details yet. The thing I dread most is people trying to "bring me back to the fold" or getting maudlin.
Christine's wonderful 'butyoudon'tlooksick' message board has been a real help to many of us with invisible illnesses, & a way of 'meeting' others & overcoming the loneliness.
I am housebound with fibromyalgia,CFS & interstitial cystitis, & over the years most friends have drifted away, some because they did not understand. I have no means of making new friends.
Please keep in touch with your friends who may not seem able to offer you much back because of illness. Your friendship will be very much appreciated. The best thing you could ever give them is your time & understanding, but remember they may become tired very quickly. Frequent but short visits may be best, it gives us something to look forward to. thank you
I agree with everything Christine suggests. I have Lupus, and one of the things that drives me nuts is when someone says"you look so good today, you must be feeling better". I do not "feel better". Pain is not something you can see,like a cast. I still shower and get dressed and even put on make-up, but I am in pain constantly.
I have Lupus too. One of the things that I do for friends that are sick is to prepare meals for them and deliver them. I use paper and plastic containers for quicker clean-up.
As far as the blank card is concerned, write in it exactly what you said in the first paragraph. People who are seriously ill (I've been there)just like to know that people are thinking of them. Please mail the card as soon as possible, I know that it will lift your friends spirit.
Having Lupus also I have been known to make snide remarks when people try to figure out what you have but won't ask. As with any chronic illness I try to meet the people as people not an illness. I am a retired RN so I have seen both sides.
Hi,

Like Christine, I also have an invisible disease, okay 2 but who's counting: ) I am 40 years young with 3 teenagers and a fabulous husband...from the outside we look like the All-American family. From the inside you see a woman that is still trying to believe that I have 2 illness that have made me quit my job, stopped me from playing with my children the way I use to and also from having a "normal" relationship with my wonderfully caring and loving husband. Approximately 2 years ago, I was diagnosed with CRPS Type 2 (Complex Regional Pain Syndrome) and Fibromyalgia. Two years ago I went into surgery to have a cyst removed and a bunion fixed. Six weeks after the surgery with no end in sight as to the amount of pain I was having they diagnosed me with CRPS. I remembered reading the prescription for aqua therapy reading CRPS....huh...what is that....my doctor suggested i look it up on the internet. I typed the letters CRPS into Google and my life changed forever, as I read everything I could find out about it I remember thinking how was I ever going to be able to explain this to my family and friends...I remember thinking that surely they had misdiagnosed me...now 2 years into it I know that they did not misdiagnose me ...29 pills a day just to try to get me through the day...having to quit a job that I loved...disappointing my friends more often than not when they want to come see me or for me to go out to them...the pain is always there. I either hurt or am so exhausted from the hurting that I can't meet them for drinks or to go to the mall to find just the right dress for one of my friends. Okay I'll get off my pity party and let you know that Christine made some great suggestion (as she always does on her website www.butyoudontlooksick.com.). I was going to pass on to you a few other things my family and friends have done for me...

1. My friends got together and made me a coupon booklet that contains coupons for everything from taking one of my kids to the mall when they need something new to coupons for one happy hour. I'm allowed to use one of my coupons at any time and one of them will be right there for me. It allows me to do things and get things done at my leisure and not just an empty promise of just let me know if you want something �or if I'm "up" to having them over to my house.

2. My husband has given me his laptop that he used for work so I can get online whenever I�m up to it even if I don�t have the energy to sit in a computer chair at one of our other computers. This laptop has allowed me meet people from all over the world that also have CRPS and Fibromyalgia.

3. After I first became ill I gave my whole family and all my friends several of the best websites I have found about my illnesses so they could looked them up and learn what it is I have and how it can effect me and my family and friends. This kept me from having to go over and over about my disease and answering the same questions. After they read up on the diseases themselves then they came to me with some very caring questions and suggestions that they would not have known to ask had they not learned about the diseases themselves.

I not sure if this is what the producers of CNN had in mind in posting this blog but I do hope that if any of you are ever in my position or in the position of being a friend to someone that does become ill that you will have a few other tools in your life tool belt to better understand the person who is dealing with an invisible illness.
I recently had surgery, and a lot of well meaning people cooked food and brought it over. The food was a great idea because I was not up to cooking, but no one thought to ask if I had any dietary restrictions. I ended up throwing away or giving away most of the food because I could not eat it. So offer to bring over dinner and make sure to ask if the person who is sick has any dietary restrictions:)
I've been battling Systemic Lupus for six years, and it has attacked everything from my joints to kidneys. I'm now 26, and find Christine's suggestions not only wise, but rife with compassion. When I was getting a spell of chemo, I always had a book or family member who inspired humor, and more often than not, strength. I have been annoyed by "well-meaning" people, though, some of who suggested I find another treatment option, that I'll inevitably feel better, and it's not so serious. If only they were in my shoes! :-)
What helps me the most is having another person with me. Nothing cheers me up more than a visit -- even when I'm at my worst! I have Rheumatoid Arthritis, Sjogrens & peripheral neuropathy (my feet sometimes feel "like bacon on a griddle!"

Friends, acquaintences -- company! And the most important -- PRAYER!
Thank you so much for covering this topic and acknowledging Christine's hard work on her website. :) I also suffer from chronic pain (fibromyalgia and not lupus) and I am going to forward this article to friends and family.
Once again Christina has enlightened us about what and how to treat a friend with chronic illness. Her site is such a gift to all of us that live with chronic illness. It is so very difficult to explain that just because we look good, we still need the "parking pass."
Christina, thank you.
I have end-stage liver disease from Hepatitis C, and have been on a tranplant list at Stanford for 10 years. I am at risk for bleeding out from varices, have problems with near-constant nausea, am easily fatiqued and have had to cut back on my activities. When I do take the effort to get out, people tell me all the time that I don't look sick. That doesn't help. That implies I'm lying or am ignorant of the true state of my health. butyoudon'tlooksick.com has been a big help in dealing with my illness practically, and in having responses for those people - check it out!
As another Lupie who gets told by well meaning people "but you don't look sick" I often use Christine's "the spoon theory" to help people understand what having lupus is really like. (If you really want to know then read the spoon theory on her site)
The 5 suggestions that Christine has offered are right on the money! I even have the "lupus sucks" shirt which really explains it all!
when i was diagnosed with breast cancer, i had some amazing friends who became my family because of their kindness. they did things such as; making my family frozen meals so they wouldn't have to cook while i was sick, taking my kids for walks so i could nap, and holding my hands when i received chemo.

it is the simple things you do for people who are sick that really matter the most, in my experience. i can never repay the kindnesses shown to me, but i am now fortunate enough work for a breast cancer foundation and help others who are going through the same thing.

www.verabradley.org
Christine, you are an inspiration to me. I have sent the link to your site to many people in my life. I have quite a few auto immune illnesses and deal w/ pain constantly. You have made chronically ill people easier to understand for healthy people. My family and friends are much more empathetic now. Thanks to you I can say no to people without them taking it personal. THANK YOU!!!
Some friends are not educated about what lupus actually is, they don't feel comfortable visiting a patient with a lupus diagnosis. The saying, "you really find out who your friends are when you get a diagnosis," is very true. Some seem to panic, fearing the lupus patient is terminal.
Personally, my family and church do not take the time to educate themselves. Lupus is mostly an invisable disease, giving the impression of "you do not look sick."
I am very grayeful for Christine's courage and persaverence in promoting her website!
Great suggestions from Christine and others who have commented.

Having Cystic Fibrosis, another chronic illness, I have also found her "Butyoudontlooksick" site a wealth of information, inspiration, community and laughter.

Making someone's day a little brighter with laughter is always appropriate, if it done with kindness and sensitivity. A book on humour, a dvd with a good comedian, the "I Love Lucy" boxed series of dvds...all are medicine for the mind, body and soul.

When I was last in hospital a family member would email me a daily "joke of the day" and a funny picture that always gave me a boost, and in turn I would have other patients, staff, and visitors come in just to ask me the joke of the day. Every one left with a smile, and as you all know smiles are addictive. You can't see someone smile without responding with one of your own!

Lastly, I was always touched when someone would say as they were leaving, or ending a phone call "You are in my prayers." It made me feel so important and special.
Another good idea is to take a funny movie with you when you go to visit. Most hospitals have DVD players now days and there is nothing better than laughing with a good friend to make a day better
I am shocked that, we as a nation, are this concerned about cupcakes when the real root of the problem is family morals and values. We have removed everything from our schools that allow teachers to help students become GOOD people (ie. discipline, pledge, prayer) and yet we wonder why children are becoming less respectful and, yes, overweight. If children would get off their rear-ends at home, and more at school, and do something other than watch TV, talk on the computer (which has led to many problems socially), play video games, etc. and become active they would, no doubt, begin to loose weight. I eat cupcakes, my son had cupcakes often at school functions and at home, I make them for my mieces and nephews and they love them. BUT, all of us are active in other ways, playing sports, walking, bowling, dancing, etc. Therefore, the weight gain from UNHEALTHY cupcakes has not been a problem. Wake up - get up - exercise.
No Energy, I want to but I can't seems to be the norm with me these days.. I look outside and I want to take the kids skidooing I want to but I can't..
I want to go to canaval today, but my pain and no energy say NO YOU CAN't. Im not runing my life no more its running ME...

I've always forced myself to do it but now the chest pains say to me YOu better not. No don't do it.. Ask Daddy.. and I'll take the pics.. Our memories have just changed.. My Energy has forced me as an outgoing mommie to confined to my room with the kids coming in and out to talk or watch tv. but I want more.. They want more.. Did you ever have to settle.. Now I have to and my kids have to..
I run a lonline support group for kids with brain tumors my son had one. Can't even do that.. So her how it goes. New laptop for my bed.. New 32 inch widescreen tv for my room and soon a jucuzzi for my room so I can soak.. There they all love me and they all know. But I think my fiends are scared that I might break..
YES I Have LUPUS...
Brenda
Christine has been such an inspiration to those of us that suffer from invisible illnesses. She has helped so many of us and here she is again, helping.
I don't have Lupus, but I have Primary Bilateral Lymphedema of the Lower Extremities and Christines site has helped me alot!

Great blog!
Christines site provides many us with Rhuematoid Arthritis and Anyklosing Spondilitis with an easy comment to the many many people who say "But you don't look sick". Thank you Christine.

I resent the many people who think arthritis is only an old age joint problem instead of over 100 different kinds, many very serious and some even effect children. The snide comments and remarks do not help.

Why don't people just ask if you need anything, instead of deciding on their own. People have given me food that I had to do a lot of work to eat, books that I can't hold in my wrists and cheery idiotic comments meant to make themselves feel good but are no help to someone who is NOT going to get better.
i am a member of youdontlook sick.com i have PTC. YAY cristine!!!!! to me laughter is the best medicen i can get... come see me and make me laugh make me smile. just jokeing around can take your mind off of alot of things.
Well done Christine. And thank you Jen for writing about her. It is so hard to describe what we all go thru living with lupus, or any other chronic illness. These illnesses can make you feel like you are alone. Yet you could have a housefull of people around you all the time and still be alone inside yourself. I am a 37 year old mother of two. I also have not only one chronic illness but many. Sjogren's syndrome, vaculitis, fibrosis, NHL cancer stage 3 E and the list goes on.
2 years ago, I shattered my left leg and had been in a wheelchair for a year and a half. ( which I still have to use from time to time). 4 months later I broke my ankle. Then my foot ( all the left side)I found out recently I have lost 33.1% of my bone in my left hip. I am only 37. But yet my body thinks it is 137. I can not play in the park with my children like I use to. I can not volunteer to go on my children's field trips. I cant skip rope with my 9 year old daughter. Or run football with my 16 year old son. BUt I decided a long time ago ( I was first diagnosed with Rheumitoid Arthiritis when I was 24). I would not let these illnesses bring me down. I watched my Father give up at a young age with the illnesses he shared with me. He passed away at the young age of 45. I decided I would rather LIVE with my illnesses . Than to DIe with them. I try to make everyone who knows me, enjoy their time around me. I am as indepentant as I possibly as I can be. I ignore the pain as much as possible. BUt I still feel it. Every day. All the time. Some times worse than others. I keep my self going even when I know I wont be able to walk when the day or chore is thru. BUt The thing that keeps me going, is LIFE. I have but one of them. I want to enjoy it while I am here. Christime is very wise and has been thru so much herself. She is a wonderful example to everyone.
When living with any illness. We seem to withdraw from people. Not wanting any one to see how bad we feel or look. The medicene we must take sometimes makes us swell. So we gain extra weight . Ontop of not being able to exercise and just walk like every one else. Or like we use to. My opinion is, We do not always want company visiting us. BUt still come over . Even if it is just to sit with us quietly. We dont always feel like talking. But call anyways if only for a moment. Just to let us know You are thinking of us. Please dont shut us out as if we are a rabied unwanted dog. We are not contagious. You cant get our illnesses by sharing time with us. Or talking on the phone or eating lunch togethjer or by sending us a letter or card. We need you now more than ever. We can not let these illnesses rob us of our spirit. We may not jump as high, or run as fast, but we are still here. Trying to climb the same mountains. Hike the same hikes, walk the same walk. Trying to live , just like eveyone else. It is just harder for us at times. So we may need an extra hand. Be there to lend it to those you know. They will give you so much back. In knowledge. You will learn to deal with things that worry you. The worries wont seem to be so big any more .We can give you strength, by watching how we deal with all we go thru. I believe these illnesses have made me even stronger than I was before. Not physically. BUt they have given me a stronger WILL.
My motto in life now living with these illness is
"I have these illnesses.......they DO NOT have me!!!"
To everyone, sick or not, May you each enjoy all that life brings. Smile at struggles, humm a happy tune when you are on the edge, sing like no one is listening, dance like no one is watching , and most of all LIVE"
Another thing that can be helpful is invitations to visit your home without expecting reciprocity. I have chronic illness that makes it too difficult for me to keep my house neat enough for guests or to clean up afterwards. People invite me to dinner at their homes, but then don't invite me again when I don't invite them to my place. Please remember that not getting a return invitation doesn't mean that someone doesn't appreciate your hospitality.
As a person with chronic illness and possibly cancer, I can sympathize with both sides of the equation. In my opinion, the worst thing a friend can do is go into hiding. Illness can be a very lonely thing.

Christine's suggestions were excellent. One thing I would add is that you don't necessarily have to have a lot of conversation when you visit, especially if your friend is spending a great deal of time in the hospital. Sometimes just sitting quietly with a sick friend can be a comfort to them.

One thing that is aggravating is when someone keeps pushing the latest fad "cure" on you. Despite the good intentions, the end result of this is usually that the sick person feels like they're being told that if they were serious about getting well, they'd try said fad. This is quite frustrating to a person who has tried multiple remedies with no success.

One thing that really hurt my feelings was when I was told that the reason I was still sick was because I didn't go to a certain faith healer. Another thoughtless person said, "You used to be hot. What happened?"

And whatever you do, don't ask a person who has an incurable ailment if they're better yet.
We deal with illness on a daily basis. In my husband's case, it did change who he is, and he cannot do the things he was once able to do.

This is happening to many people in NYC who were exposed in the aftermath of 9/11. We just keep trying to love life and keep living...as long as we can. Those who are the caretakers talk amongst each other...and we've all developed some sort of strange amount of black humor.

God Bless all who are ill, and I wish you great health.

www.wtcsick.com
I live in a body that seems to have been taken over by Lupus and RSD. Despite my Taurus will and attempted positive mindset... ha!...Every corner has left me with challenges that are becoming harder to handle and tougher to overcome. Lupus has been a bugger.. causing cancer, I beat it... then a stroke, beat most of it, still use walker for hemipalygia...then on a not so good day, in bed, watching Oprah, a SUV lost control, went airbourne, and crashed through my bedroom window at approx 57mph. House condemned....I survived! 3 surgeries, some hypnotherapy and 2 yrs later and I am still here!
The thing that gets me though is that through all of this... Is how many people, knowing what I have been through... ask the same question, the same way... "So how ya been?" but before I can tell them the truth... "You look great" So I ask... Why ask if you don't want to know the answer?
My reply now to most EVERYONE, is
"OH, fair to partly cloudy" They laugh, I sigh and it's left at that.
Besides, my energy (what there is of it hehe)is better reserved for the sunny day!
I love Christine's site and have linked many friends and family members to it as they try to understand what I am going through. I have rheumatoid arthritis and the pain and fatigue are crippling on most days despite aggressive treatment with drugs and therapy. The way to support me best is to listen to me, help me when I ask for it, and treat me like the person I always have been. I'm still me ... wheelchair, walker, cane and all. :-)
Acts of kindness, physical touch, kind words, giving of gifts, a kiss, spending time listening & talking & sharing.

All of these are expressions of love to an ill person.

Let them know you love them & care & are thinking of them in their time of need & that they are not alone.
I have Lupus and Sjogren's Syndrome. The part that hurts about having these diseases is that people think you are faking sickness to get attention or a free day off of work because they can't see that you are sick.

I begged to have a large printer moved from my office because the fumes were making me sick. My bosses moved it after about 3 months and told everyone that I had made up my reaction to the printer. And when I need to stay home, they don't believe that I am sick. I return to work with snide comments about how I'm not keeping up even though I work through lunches or stay late. I always meet my deadlines.
I too have an "invisible illness" and when I have the energy to visit others I always bring a comedy CD as I know it helps me to forget my issues. I have really gotten into stand-up comedy lately and there are a great variety of DVD and CD's out there but my favorite one to share is Jeff Dunham's "Arguing With Myself" and I have found that almost everyone loves a ventriloquist. Also my one suggestion is that if your friend must cancel plans don't ask why as it is sometimes difficult to admit the real reason because it makes me feel bad or embarrased instead just say ok no problem, when you feel up to it just give me a call trust me they will love you for it.
As someone that has worked with Christine, I can say she is an awesome person! I am so happy that she has taken the time and made the effort to make us all aware of what we can do to help those we love that are in pain. Keep up the awesome work Christine!
I too have Lupus/RA and I am tired of people telling me that I am going to feel better. I know that I have good and bad days; but dont tell me that it WILL GET BETTER!!! I know that I have a long road and it is a hard one with lots of tears. I think the nicest thing that I have people do for me is help with my grocery shopping and making meals that I can just warm for my girls and I. Being a single mommy after taking my treatment on Mondays; for three days I feel terrible. So I have friends that pulled together and I have meals that are made for the girls and I for two days a week. Just know that if your friend is having a bad day; dont take personally. Just be there and listen to them and know that sometimes there isnt anything you can say. Thank you to all my Friend and family who support my girls and I everyday and love and caring.
The thing that frustrates me the most is people that assume I am in pain because I am overweight. My pain medications have made gain weight.Suggesting I "put down the cupcakes" or "try this diet and that exercise plan" is not going to help me. Assuming my pain is not valid because I appear overweight is assinine. Your judgement doesn't help.
I'm so thrilled to see this topic chosen to write about and discuss. Christine is amazing and I applaud her work. I am the founder of National Invisible Chronic Illness Awareness Week (www.invisibleillness.com) and would love for more people to know this week actually exists. Please join us Sept 10016, 2007 for 20 free online workshops for the chronically ill. Sign up for the ezine too and receive the first 40 pages of the book "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend" --I wrote the book, and to be honest, I use it all the time to try to brainstorm ways to encourage ill friends... because I often draw a blank too when the time comes around. Thank you CNN for covering this important topic. Nearly 1 in 2 people in the US have a chronic illness and 96% of it is invisible. Illness impacts nearly every family out there to some degree.
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