The Internet is full of articles and suggestions about what to say and what not to say to a person with a serious illness. I get that most people have no idea what to do, and often feel like they put their foot in their mouth when they do say something. Let’s face it – illness makes people uncomfortable.
I have been professionally trained to work with cancer patients. Much of what I’ve done is to advocate and help empower patients to find their voice. Many hours were spent with a variety of patients and I worked to develop an understanding of what they needed. I believe the key with any serious and complicated illness is working to understand the needs and feelings of the person.
When I got sick I found myself on the other side of the fence. Honestly, the lightbulb come on much brighter. I could train and listen, but experience became the real teacher. Recently I had lunch with a friend of mine who has walked in similar shoes, and it was amazing how we shared the same stories. Though our illnesses are vastly different, we both understood what the other felt. Everyone and every situation is different, but compassion is universal!
From that lunch I came away with a great deal of information and I developed my own list of what to say/do and what not to say/do. I believe these suggestions are applicable to many serious illnesses in addition to cancer, and could be helpful to a person who may have that awkward feeling (like I used to).
It’s not about you. This is the most important thing for anyone to remember. Sometimes you need to get over your own discomfort and put your feelings aside. The last thing you want is for a seriously ill person to have to console you.
Do not ignore them. I can’t tell you how important this is. Avoidance it hurtful! Do not stop communication because you don’t know what to say. One of the worst things that can happen is that friends and family disappear. I’ve had it happen to me and it stings. The longer you avoid speaking to a sick friend or family member, the more awkward it becomes. Instead, acknowledge that you don’t know what to say – it’s much better than the person feeling your absence.
Do not say “You don’t even look sick.” What is sick supposed to look like? This one really gets under my skin. I may make an effort to make myself look better for many reasons. Inside I may feel like utter crap and be in terrible pain. Telling someone they don’t look sick minimizes how they feel. The absolute best comment I’ve heard regarding this was, “You look good today. I know you feel terrible, but you are covering it well.” Awesome. A compliment and acknowledgement.
Continue socializing . Don’t stop inviting the person to spend time with you. Any person loves hearing, “I miss your company and would love to go to lunch” or “Would you like to meet for coffee?” It’s important to make the person feel as if they are not forgotten. It is equally important to recognize the person may not feel like being in public. I’ve had friends who call and ask if they can bring lunch over for a visit. Another good friend comes by for coffee and conversation. It’s great to feel connected. Because I cannot drive all of the time, it is nice to have someone pick me up to simply get me out of my four walls. If you are having a get together it is ok to continue to send invitations. People who deal with long-term illness struggle with the disconnect in social circles.
Don’t be afraid to ask someone with a serious illness to explain how they feel. Let the person bring you in as deeply as they want. I often tell people that I have good days and bad days. Sometimes I illustrate what those days may look like depending upon the person. In trying to learn more about daily struggles, you are making the person feel a little more understood.
Do not force your medical opinion on them. People have an opinion. I have hated having people second guess my care and wondering why X,Y, or Z didn’t happen sooner. When YOU are my MD then you can talk to me about treatment options. Do not compare your sister’s situation to the person. Your sister’s cancer scare, or migraines are likely not similar. And for the love of God – do not say you read something on the Internet! Odds are the patient has already read everything out there and learned to stop consulting Dr. Internet. Yes we know beet extract and wheat grass have great benefits, but we don’t need to consistently hear about your alternative treatment plans. We understand you mean well, but chances are it is about the millionth time we’ve heard it.
Offer to help and follow through. I can’t tell you how awesome it is to have people in my corner. I’ve had people who have taken the time to really understand how my illness affects my day-to-day life and offer to help. People call to say they are bringing dinner, or they would like to pick something up at the store for me. People have shown up at my door with an envelope full of gift cards they have collected. Wow! Find out if the person has a good support system, and be a part of that system if there is a need. I cannot imagine facing what I have faced without the help I have received.
“I bet you love not working.” No…no I don’t. IT. IS. NOT. A. VACATION. If a person is so sick that employment is not an option it is often a hardship. I’ve always worked and contributed to my community in addition to helping my family out financially. I miss working, but I am painfully (pun intended) aware that it is not possible. I hate being disabled and would gladly go back to my former self. Please understand that some people have to spend the majority of time being careful about what they do every single day. Often times going to the grocery store is like running a marathon – how can a 9-5 job be possible?
When you can’t be physically present. Call, text, email, mail cards. There are more ways of communication than face-to-face. It’s also difficult for immunosuppressed people to have visitors and other methods are so welcomed. It goes back to that feeling of disconnect many seriously ill people have – being isolated can be lonely. For family and friends who live out of town – just because you aren’t in the person’s daily life doesn’t mean you are off the hook. Talk to the person directly and don’t get second hand information. Discussing the illness with a spouse or another family member sometimes doesn’t cut it. With the myriad of communication options, you have the opportunity – use them.
Think before using social media. Facebook, Twitter, Instagram etc… are all new ways to communicate. There are times when communicating in this manner can be tricky. I’ve had instances where someone has posted about me, or to me, but they haven’t had the decency to even speak with me directly. Posting status updates about a seriously ill person may not be something they want. This also goes for cryptic messages about the person. Come on people….it can be figured out by others. Ask yourself “Am I close enough to this person to be using their name or situation on Facebook?”
I am not a shrink and these are merely my personal insights. So now there is another list on the Internet to help you navigate the serious illness waters. Perhaps these will help, or just float around in the vast World Wide Web.