What the Chronically Ill DON'T Want to Hear (part 2) By Toni Bernhard
In my article, "What Those with Chronic Pain or Illness DONT Want to Hear, I shared some of the comments that have been made to me since I became chronically ill in 2001. Many people shared that theyd been subjected to the very same comments…and more. And so, Ive put together a small sampling of comments that readers have had to listen to. As I said in the first article, Im not trying to make fun of others. My intent is to educate people about what we face and also to help us feel less alone.
Bottom line: Fielding these comments with grace and skill is yet another challenge faced by those of us with health problems. Ive divided the comments into five categories: Change Your Lifestyle; Such an Easy Life; Chronic Means Chronic; Its Your Fault; and Religion and other Spiritual Matters.
Change Your Lifestyle
1. Do you take vitamins? This comment reminds me of the people whove asked me if Ive tried sleeping pills. Who hasnt taken vitamins?!
2. Are you eating enough fruits and vegetables? Lots of people report getting asked this.
3. Just eat more.
4. Just eat less. (This one forms a nice symmetry with #3.)
5. Are you drinking water?
6. You just need some fresh air and exercise, thats all.
7. Why dont you go to bed earlier?
8. Why dont you take a shower? Youll feel better.
Such an Easy Life…
1. One woman wrote: I mentioned to a friend when I got to his kids birthday party that I almost didnt make it because Id been in bed most of the weekend and it was hard getting out of the house. He said, ‘You have such an easy life!
2. Wrote another woman: Its frustrating when someone thinks you are ‘lucky to have so much leisure time available. Yeah, its great to have so much time, but Im unable to work and thus am so far below the poverty line that homeless people begging for change probably have more money at their disposal than I do.
This raises what I think is a hidden epidemic for those with chronic health problems. Many are living below the poverty line, due to a combination of not being able to work and of having to spend any money they do have on medications and other treatments that health insurance doesnt cover—if theyre lucky enough to even have health insurance.
3. Finally, this woman sums up Such an Easy Life… as well as I could: My favorite is when people say Im lucky that I dont have to work. Its like telling someone without legs theyre lucky they dont have to take the stairs.
Chronic Means Chronic
1. Several people wrote that theyve been asked, Youre STILL in pain? Many people have said to me: Youre STILL sick? Yes, were still sick and were still in pain because…chronic means chronic!
2. Said to a person with chronic pain: Dont worry, youll be able to go hiking again soon. Ive had people say this to me about many activities—from traveling to resuming my teaching career. I think that if youre not sure what a friend might or might not be able to do in the future, its better not to raise it.
3. Call me when you feel better and we'll go to lunch or do something fun." Again, chronic means chronic.
4. At least its not cancer. This comment doesnt fit neatly under any of the categories Ive used, but I wanted to include it because several people reported having had this said to them. Its not helpful. In fact, one woman wrote that at least if she had cancer, her family would get more support both from the medical community and from their church congregation.
Its Your Fault
I recognize that this category is subjective. Comments that I interpret as implying, Its your fault, may not seem that way to others. That said, heres a sampling of comments that, to me, are suggesting to a person who is sick or in pain: its your fault.
1. Youre too young to be sick, several people reported being told. One of them added: Oh, how wish this were true. Maybe by the time Im in my 80s, people will stop saying it.
2. One woman reported that her friend, after listening with a seemingly caring ear, said: Attitude is everything, you know.
3. A young woman wrote that shes been told to distract herself from chronic pain by getting a job, mingling with people, and engaging my brain. About these comments, she said: Im sensitive about being perceived as lazy. Im hurt whenever this comment is made to me. Id love to be able to will myself to do whatever Id like. This resonated strongly with me because I spent years trying to will my body into good health. All I got for my effort was a lot of mental suffering added to the suffering of the illness.
4. You must be out of alignment with your life and looking for an excuse to make some changes. The recipient of this comment said, But some of us really loved our life before we got ill. To that, I say, Yes. Yes! I was never happier—personally and professionally—than when I got sick in 2001.
5. Look what happens when you dont look after yourself.
6. Just snap out of it. The woman who reported this comment went on to say: Like its really that simple and Im so totally dumb and stupid that cant figure it out. How silly of me after so many years.
7. Saving the worst for last, a person reported anonymously that his or her doctor said: If you think of yourself as a cripple, you will become a cripple. This comment is hurtful and inappropriate in so many ways.
Religion and other Spiritual Matters
We all have our particular religious and spiritual beliefs and they may understandably feel essential to our well-being. But in my opinion, religious and spiritual beliefs are so personal that unless you know that the person youre talking to shares your beliefs, it's better not to raise the subject.
Keeping in mind that this is a sensitive topic, I offer some comments that have been directed at the chronically ill.
1. Two people wrote that theyve repeatedly been told, God never gives us more than we can handle, and that its not at all consoling to them. In fact, they said it makes them feel like failures—as if theyre not handling well what they should be handling well.
2. God has a plan for your life.
3. All things work for the Good for those who love God. The woman who reported this comment wrote about it: Theres nothing more annoying than some random bible quote thrown into your face as a ‘reason for chronic pain.
4. If you pray to God harder and longer, He will cure you.
5. The universe is trying to teach you something.
6. One woman wrote that her brother repeatedly says to her, Obviously you dont pray to God enough because if you did, he would heal you. So you must be doing something wrong. She said that every time he says this, she bursts into tears because she feels blamed for not doing enough to get better.
Ive found that many comments about religion, regardless of the speakers intent, leave people that theyre spoken to feeling as if its their fault that theyre sick or in such pain. And so, these comments could have gone under the previous heading: Its Your Fault.
If you have friends or family who suffer from chronic pain or illness and you're thinking, So, what can I say? have a look at my piece, "What People With Chronic Pain or Illness DO Want to Hear." There are a lot of helpful things you can say!
2012 Toni Bernhard. Thank you for reading my work. I'm the author of three books:
How to Live Well with Chronic Pain and Illness: A Mindful Guide (link is external) (2015). The theme of this article is expanded on in this book.
How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow (link is external) (2013)
All of my books are available in audio format from Amazon, audible.com, and iTunes.
Visit www.tonibernhard.com (link is external) for more information and buying options.
https://www.psychologytoday.com/blog/turning-straw-gold/201208/part-2-what-the-chronically-ill-don-t-want-hear
