Have you ever been betrayed by someone you thought was close to you? I’m not sure that the level of closeness really matters as much as the absolute sense of betrayal that one experiences. I want to bring this comparison much closer to home for everyone, and have you imagine for a moment that they body you reside in, puts you in that constant state of betrayal. If you can, for a moment, imagine that constant and continuous ultimate betrayal than perhaps you have earned a peak into my life. However, this article is not just about me, it’s about countless millions of people living with chronic and debilitating diseases. In my career, I have worked with people who have countless disease, including but not limited to: congestive heart failure, crohn’s disease, heavy metal toxicity, diabetes, epilepsy, kidney failure, and the list goes on and on. I live every day of my life with chronic neurological Lyme disease. I don’t say this seeking sympathy, but instead to give you the framework from which I speak about this topic. On some level it’s as if my body is in a constant state of betrayal. It’s always exhausted, in pain, and never happy with what I feed or water it. Try as I might to work in conjunction with my body, it’s time where things are still off.
This blog is designed to educate those people who love, live with, or know people who have a chronic illness and pain. Below is a helpful list of things to not say to a person who is living in an unwell body:
- But you don’t look sick: I’m not sure what most people believe “sick” looks like. However, unless you live a few hours in my body how about you not compare my experience to your expectations. Let me just run down an average day in my body for you. I wake up already physically exhausted and my pain is higher than most people can handle without losing their sanity. I work fairly consistently on looking and being presentable. Staying home and not working is not an option for me. That doesn’t mean I don’t sometimes sit in my car and figure out where I need to park to be able to walk into my office. It’s all a battle of figuring out what I can do and what I need to adapt to.
- Can’t you just….. This one varies as much as the people speaking it. Sometimes it sounds like, “Can you just leave the wheel chair behind” and sometimes it’s more hurtful things like “Can you just not talk about that today.” Let’s just agree that if we are going to use the phrase “can’t you just” it is automatically going to sound dismissive and be dis-empowering. I use a wheel chair when my husband and I are going to events or activities where I will have to walk or stand. You might be asking why I use a wheelchair. The reason I have decided to succumb to use the wheelchair is because I’m fighting constant fatigue. The fatigue I battle is not just a little tired. The best way I can describe it is it feels as if all of your energetic reserves are depleted. My husband, my doctors, and I made an informed decision together to save my energy and allow my body to fight this disease.
- Maybe if you…. No… Just no. I have heard every well meaning suggestion out there: Maybe if you just release the traumas from the body, maybe if you just give up caffeine, maybe if you just sleep facing the east, maybe if you disconnect all internet to your home while you sleep. I have become exhausted in the reality of everyone having a wonderfully well-intentioned solution. Please don’t be offended but I have a wonderful specialist, and I understand and honor that you are reacting out of a place of love and concern. However let’s make an agreement to wait to offer suggestions until they are requested. It’s kinder and gentler that way, and no one gets emotionally hurt in that process.
- Should you really be doing/having/ seeing that? The frequent form that this question takes in my life is “Should you really be having that iced tea?” The answer for me is typically the same, unless you want me vomiting (for you to clean up) from the massive migraine that I constantly experience, that would be a yes. Let’s understand the dynamics here for a minute. Even if you are a physician, dietician, or a pharmacist, the people in your life that you love and care about are not your patients. I understand you mean well with your questions. But questioning the Crohn’s disease patient on their food intake isn’t especially helpful. Consider, for a moment, the quality of life of the people living with these issues. Is their life going to be dramatically altered by whatever they are indulging in?
- But you are so strong. Most people who are living with chronic illness or pain are very strong emotionally and physically. My husband regularly comments that I seem to be able to handle pain that he couldn’t even imagine. Strength (internal or otherwise) has nothing to do with being ill. Illness and pain is not just for “weak” people. Perhaps those of us who are struggling with something are strong in spite of the illness or pain.
- Just think positive: If there was some kind of device connected to my brain I’m convinced that my average amount of daily thoughts that would be measured as negative or neutral would consist of less than 1%. I have completely changed my thinking. While I am a million percent believer in the power of positive thinking; and I also ascribe to the theory that we create our own reality; my experience is that has not changed my health status. Please don’t misunderstand me, I think positive thoughts and experience gratitude about my health on a daily and moment-by-moment basis. The other concern here is that most of us judge ourselves so harshly; we could do with some grace and love from the rest of the world.
- Have you tried_______? It worked for my neighbors, babysitter’s cousin. This is a constant in my life. Or the other variation is well so and so had that but he’s over it. There’s a part of me that is massively confused by this approach. I mean I want to ask people if we are talking about the same thing. Not so long ago my husband ran into this “cure” on the internet from Lyme disease. After telling me about it he asked me my thoughts about it. I explained to him that I feared the time of having the ability to believe in short term cures or solutions had passed. That wasn’t an easy response for me to give. And in the beginning if someone told me eating just peas 24/7 and standing on my head for three hours a day cured someone they knew I tried it. If we explore the message (beyond the well intentioned “cure” for this person you know and care about) it’s kind of dis-empowering as well. It says to them, “hey! I know more about what you are struggling with than you do. Here’s a cure!”
- It must be nice to________. This is by far, one of the most insulting responses possible. They range from “It must be nice to be able to stay home all day” to “It must be nice to be able to not have to walk” and varying stages in between. Some people are fighting for their lives or at the very least their comfort. It would be amazing if we could just stop these kinds of comments. I understand you may have intended them jokingly, but when we are struggling with massive health issues we can be a little sensitive.
- How are you: Because of the complexities of my mind this question is like being trapped in a snare. First of all, for me personally, it’s too vague. Secondly, this is a catch 22 for us. Because either we deny how we physically feel or we are completely honest and risk you becoming annoyed with us. I am unbelievably blessed to have some of the most amazing friends in the world. They say things to me like, “How is your pain today?” or even “how’s your energy doing today?” These are narrow questions and don’t run the risk of me feeling like a horrible complainer.
- At least……. If you have never seen the Brene’ Brown video on empathy I would highly encourage you to watch it. It breaks down the way empathy works. Let’s just be honest, when you say to someone that something horrible has happened in your life, and their response is “Well at least…” What is your internal response? Because that’s not even a helpful response.
I have spent a lot of time in this blog talking about what not to say to someone who is ill. I want to arm you with the most powerful and empathic response possible. “I’m sorry you are going through this”. That’s it! 7 words. How much differently would our lives be if we treated each other more gracefully and lovingly?
Jenn Bovee, LCSW is a spiritual psychotherapist and life coach. She offers in person sessions as well as sessions at a distance. Learn more about her here: www.JennBoveeLCSW.com