You’ve just learned that a loved one has been diagnosed with a chronic illness. You’ve searched the internet for things that you could do or say to someone through this difficult time but only come up with what NOT to do.
I’ve read through some of the “What Not To Say” articles and while some are helpful as well as funny, others were confusing. As a chronically ill person myself, it led me to wonder, “Well what DO you say to a chronically ill person?” With some of the lists, it seemed as if EVERYTHING were off limits, which left “Hello” and “Goodbye” as some of the only reasonable responses.
Here is a list of eight things that you can say or do to help a person with a chronic illness deal with this new challenge in their life.
“1. I’m very sorry that you’re going through this.”
To the point and sincere. Can’t go wrong with simple.
2. Know that it’s okay to ask questions.
If you genuinely want to know what having a particular disease means, it’s only natural but please stop if you have any ideas on what I can do to cure myself. If I just had to explain to you what my disease is, you don’t get to tell me what you think will cure it. You come off like a jerk and it lets that person think that they WANT to be sick because they didn’t or will not taking your advice.
3. Assume that we have heard all the tips on living healthier that there is in the world and leave it at that.
I know you mean well but you must assume that we’ve heard all the healthy living tips out there. Trust me, if there is something that I’ve missed, I will trust the medical professionals to tell me. Besides, many people have researched their diseases and know their bodies inside and out. Only give that information if the sick person requests it.
4. “I’m a really great (insert noun/verb)” here in the sentence and then tell us what you’re going to do. (And stick to it!)
Most sick people are uncomfortable with having people do things for them. It’s that stupid pride of ours. If you say, “Is there anything I can do?” Most of the time, we’re going to say NO but in our heads there are millions of things that need to be done but just aren’t getting done.
My mother does the same thing and I still have a hard time telling her that I need help. When she asks, I say no and look at the wall, trying to ignore the mound of clothes that need washing or the pile of dishes in the sink. It is refreshing when someone in your life takes the initiative. It really does help and takes away the awkwardness of the situation.
5. “I’m going to do some research on your disease because I want to learn more about how it affects you. “
If you don’t know, don’t pretend to know. This is really important because do you know how many close friends and family members that are still asking me questions about my disease? Things that should be totally obvious. I give a pass to strangers but if I share a bed with you or blood, there should be no excuses.
A friend of mine had cancer and I took great pains to learn all about it. Yet, after almost three years, she couldn’t give a reasonable definition on lupus and how it affects me. It seriously hurt my feelings and showed me just where I stand in her life.
Learning about their disease and how it affects them shows that you care.
6. Assembling care packages are great!
Kleenex, cute stuffed animals, letter openers, lotion, back scratchers, house slippers, even providing services for a chronically ill person is great. Chocolate, movie tickets, hiring a personal chef or a personal assistant, etc. if you have the means for the latter. These are things that can help make their lives much easier.
7. Get To Know Their Specific Limitations: Don’t “underdo’ or overdo things.
Because I am sick, I often have limitations. There are things that I can do and things that can be very difficult. Some people react two different ways when they know you are sick. They ignore that sometimes you may have special needs or they overreact and try to do everything for you.
There is a fine line between the two. I had a friend that seemed to ignore the fact that I was suffering from some debilitating symptoms. She never came to see me in the hospital and didn’t call. When in my presence, she never mentioned my disease. I felt invisible around her. When I approached her about it, she simply stated that she didn’t want to treat me any different because I was the same person. Yes, I am the same person on the inside, but on the outside, I’m not. Ignoring me makes me feel as if I mean nothing to you. It makes me feel as if I don’t matter.
On the flip side there I had a friend that tended to overdo things. Once he insisted on pushing me in my wheelchair but I asked him not to and that I wanted to wheel myself. He ignored me, not bothering to learn the correct way to push me and almost dumped me out of the chair and dangerously into the street. When you insist on doing everything for the chronically ill person, you take away their means to empower themselves. It makes them feel helpless and takes away their independence.
Yes there are things about your friend/family member that are going to be different. But get to know what their limitations are. Most people will tell you what they can do and what they need help with. Take your cues from them and you can never go wrong.
8. Invite them out even if they turn you down a lot.
I may have bad days but don’t assume that I never want to go out and hang with the group! Sometimes sick people are left out of outings and gatherings because most assume that they can’t or don’t want to go out. By remembering that your loved one is still the same person before accident or injury is very important to us. People often leave us out of social engagments for fear that we won’t be comfortable. If your friend is in a wheelchair or has another special need, make sure that the places where you go are accessible or can accomodate them so that they too can participate in everything.
This is not an all inclusive list. There are many more things you can say or do with a loved one that is ill. It is a time when patience, understanding, and sensitivity is needed. Yes, it can and will be frustrating for both parties but remember that having a chronic illness isn’t easy, especially those who have been recently diagnosed. They are getting used to an entirely different world that can change by the day.
Use this time to strengthen your bond with that person. Remind them that you’ll always be there for them no matter what. You really can’t go wrong with that.