A while back, Lydia asked if I would write a post about how someone should help/respond to a person who is chronically ill. If you have not read, Telling People it Will be Fine, Dealing with Well-Intentioned People, or A Few Thoughts on Chronic Illness and Chronic Pain, I encourage you to do so. Thoughtful, kind, decent people are often at a loss as to how to act or respond towards a person who is chronically ill or suffering from chronic pain. In the posts I mentioned above, I wrote about what people should NOT do and in this post I want to make a few suggestions about how best to respond to people who are chronically ill or suffering from chronic pain.
Understand, for the chronically ill person, their life is dominated by their illness. There is not a moment that goes by that they are not physically or mentally reminded that their body is broken. As I type this post, I hurt…from the top of my head, to the bottom of my feet. I got up at 1:00 P.M. today, after finally falling asleep at 6:00 A.M. For three hours, I tried to fall asleep but I couldn’t. The slightest move caused my body to scream out its objection. No matter how tired I was, no matter how much medication I took, my body said, I object. Last night was not exceptional…it was just another day of me battling the illness that desperately wants to claim my body for its own. Today’s pain? Just another day…nothing special. My days are defined by less pain or more pain. There is no such thing as no pain, getting better, or recovering . This is my life, and when dealing with a chronically ill person you must understand that their life is controlled by their illness. Their illness is very much a part of who they are.
it is OK to ask, how are you doing IF you really mean it. The chronically ill can spot a faker from a mile away. They are used to people asking them how they are doing and then the person asking looking inconvenienced when they start telling how things really are for them. If you are going to ask, how are you doing, then be prepared to actually listen to the person as they tell you how they are.
Many chronically ill people have a defense mechanism that kicks in when people ask how they are doing. Often, they will say I am fine. This is their way of warding off insincere or nosy people. If you really care about the person, you might say to them, seriously, I want to know how you are doing. Remember, the chronically ill person might be quite lonely. If they are homebound most of the time, they miss human interaction and talking with other people. Most days of the week, I rarely have much interaction with other humans. I see Polly for a few hours each day, and outside of that I spend most of my time in silence. (and silence can be an enemy to the mental health of a chronically ill person) I love it when my children and grandchildren come to visit. I wish they visited more often because I crave the human connection I have with them. Even when I am in a lot of pain, their visits are often a needed distraction. (as is watching TV or blogging)
It is OK to ask, is there anything you need or what can I do to help IF you really mean it. Far too often, the askers of these questions are disingenuous. They think they need to say SOMETHING so they ask if they can be of help. Again, the chronically ill person can spot a faker from a mile away. Don’t ask if you aren’t willing to do. You will likely be inconvenienced by helping the chronically ill person, but telling the person that you are making a “sacrifice” to help them will likely result in the chronically ill person making a mental note not to accept your offer of the help the next time. On a really bad day, you might even be told what the person thinks of your “sacrifice.”
It is OK to do things for the chronically ill person, BUT don’t assume they want something done. ASK first. The chronically ill person has likely been robbed of much of their physical ability, but this does not mean that they want you to do a particular thing for them. Their struggle may be what reminds them that they are still alive. By all means help, but be sensitive to how your help might be perceived by the chronically ill person. Don’t unintentionally rob them of their human value and dignity.
Be careful about pointing out the chronically ill person’s shortcomings and failures. They already know what these things are and they don’t need you reminding them of it. One thing that really bothers me is when people correct my memory lapses. Everyone knows I am having serious memory problems. There is no hiding it. Polly knows. my kids know…only my elderly in-laws seem oblivious to how serious my memory loss is. In their mind, I am too young to be having memory problems…yet…I here I am…able to remember 40 years ago but I can”t remember who won a football game ten minutes after I watched it. The short-term memory loss is frustrating and I fear what the future may hold. The only reason I am writing this post right now is because I wrote Lydia’s question on a Post-it note and stuck it to my computer monitor. If I had not done this, her question would have quickly disappeared from my memory. I know how bad things are for me and the last thing I want is for someone to remind me of it or correct me when I can’t remember. (especially when it something that do not matter)
If the chronically ill person is homebound or rarely gets out of the house, ask them if they would like to go shopping or out to eat. Do this when it convenient for them. Asking a chronically person to go out to eat at Texas Roadhouse on Friday night at 7:00 P.M. is probably not a good idea. As a person who either walks with a cane or uses a wheelchair, I find it quite difficult to navigate crowds. I am the elephant in the room and I often feel like everyone is looking at me as I slowly walk through the store or restaurant. I prefer times when the crowds are not pressing, and this is why I love Christmas shopping online. All the fun and no crowds to deal with.
It is important to be aware of the chronically ill person’s physical limitations. Don’t put them in situations where physical harm could come to them or their illness is exacerbated. Don’t take the person’s word for it. If they are a friend or family member, you likely know what their limitations are. If they walk with a cane or use a wheelchair, parking five blocks away from the stadium or at the back of the restaurant parking lot is NOT a good idea. The chronically ill person may never say a word to you about this, but they will remember your thoughtlessness. (even if it was unintentional)
I know some healthy readers might say, Bruce it sounds like you want the focus to be on the chronically ill person. What about ME? You must understand that the life of the chronically ill person is dominated and controlled by their illness and it really MUST be all about them. Little things, that don’t cause a healthy person a moment’s notice, can have catastrophic consequences for the chronically ill person. I have told my children, grandchildren, and wife, please do NOT stand behind me. Please do NOT leave things on the floor that I could easily trip over and fall. Petty? Perhaps, to the health person, but, for me, the after effects of a fall can lead to weeks of additional pain and suffering. It is a small thing for others to make sure I don’t trip and fall by not standing behind me or leaving a toy on the floor. This is why I make sure everything is off the floor before I go to bed. If I don’t… I might trip over what was left on the floor in the middle of the night. (and I most certainly won’t remember it is there) We have seven night lights in our home, and these are quite helpful, but they do not illuminate the floor very well. More than once, Polly has heard me swearing over a fall I had because of something left on the floor. (the tennis balls the dog plays with the worst) God dammit, who left that on the floor, is not a tune anyone wants to awaken to.
If I had to give one piece of advice to thoughtful, kind, decent people who are trying to figure out how best to act or respond towards a person who is chronically ill or suffering from chronic pain, I would tell them to put themselves in the shoes of the chronically ill person. Try to see life from their perspective. Imagine being in their body and having to deal with the challenges they face every day. Doing so should result in them becoming more sympathetic to their plight of the chronically ill.
Never forget that the chronically ill person is a human being. Just because they are sick or in pain all the time doesn’t mean they are humanly lacking in any way. They are just like you, except they have a body that is twisted, tormented , or afflicted. They are still your family or friend and they need to know that you see them as such. The chronically ill person does not want your pity, or in my case, your prayers. What they want is your love, compassion, understanding, and help. Just remember, some day, you might be where they are. How will you want to be treated?