The Three Worst Things to Say to a Person with a Disease

Before our first anniversary, my husband suddenly became ill.  All over his body, his joints swelled like he was becoming the Hulk, and he complained of severe, crippling joint pain.  We immediately sought out medical assistance.  However, it has taken two years of doctors visits and a myriad of medications to fully understand his uncommon situation and to keep he symptoms under control.  We have learned that he has severe psoriatic arthritis, ankylosing spondylitis, and internal issues that are associated with the diseases. 

Along the way, we have heard words from friends, acquaintances, and strangers that were meant to console us, but actually made us feel more isolated and misunderstood.  I quickly stopped talking about his disease simply because I could not stand to hear other's comments.  There are 3 phrases I heard repeatedly that frustrated me.  For a few months, I thought I was being overly sensitive.  Then, my husband brought up the same phrases and stated that they were upsetting him.  I do not pretend to know everything about his disease, but after discussing our thoughts, I believe I know some hurtful sentences that should not be said to a person with a disease or his or her spouse.  To perhaps give you some insight, I am going to discuss the 3 phrases not to say to a person who has a disease and how to portray your emotions more effectively.

 

 

 

1.) "I know how you are feeling."

This is simply not true. You can not possibly how the person with the disease is feeling, unless you have the same disease and are in the same life situation.  I find that strangers typically utilize this phrase before they even fully understand the situation.  The fact that you had a great aunt that contracted a similar, but not the same, disease does not mean you know how the person is feeling.  For example, people often tell Chris that they know just how he feels because they know an elder who has osteoarthritis in a couple of fingers.  This pales in comparison to the pain he deals with; he has joint problems all over his body.  You may have sympathy for the person, but you do not have empathy for the person.  There is a monumental difference between the two words.  Sympathy is the acknowledgement of other hardships, while empathy is the act of understanding how others are feeling because you have experienced or are currently experiencing a similar hardship. 

A better way to express your emotions would be to say "I sympathize with your situation. It must be difficult to ..."  This way, you are acknowledging their situation and expressing how it makes you feel.  You are also giving them a chance to agree or disagree with what you think must be difficult for them, and allowing them to offer you some insight into their life.  If they do reply, ask them questions about their life.  Then, you will begin to understand more about their health condition and how it has influenced them.

2.) "You are too insert adjective here to have insert disease here."

We have heard this phrase utilized in numerous ways, but most often, we are told that Chris is too young and athletic to have arthritis.  It is a common misconception that you can only acquire arthritis when you grow old.  It is true that people typically get osteoarthritis when they are nearing retirement age, but rheumatoid and psoriatic arthritis typically manifests itself at a much younger age.  Furthermore, Chris looks athletic because he love the outdoors and sports.  It is infuriating to be told the you or your spouse appears too healthy to have a disease, thereby denying the existence of the disease and implying that you must be mistaken.  Trust us, after all the doctors visits, we know. 

A better way to handle the situation is to first except that the person understands his or her body more than you do.  If the adjective positively describes the person, like the word athletic, turn your statement of denial into a compliment by saying "Wow, you seem so insert positive adjective here to have insert disease here. How do you do it?"  You have now made that person feel proud of their characteristics and that they have risen above their disease.

3.) "You must have insert bad behavior here to get insert disease here."

Everybody knows that treating your body poorly can result in poor health.  However, people tend to forget that disease can have other causes, including environmental and hereditary causes.  Chris didn't create his disease from poor health decision; it is hereditary.  It is insulting when people suggest that he did something wrong.  The brunt of the disease actually popped up when he was working out every day and eating the cleanest he ever has.

You can not assume that all illness results from bad habits.  It is best not to say this comment at all, but if you simply must pry, ask if it is hereditary before you accuse.


Phew, I appreciate that you have made it to the bottom of my vent session.  Hopefully, I gave you a couple ideas of how to start a difficult conversation about a disease or gave you something to think about.  A person with a disease must be treated with respect.  They are going through enough already and need your support.