Originally published: 23.09.16
When you love someone who’s chronically ill, it’s hard to see them in pain and you (naturally) want to help. But intent is not the same as impact. Sometimes your well-intentioned efforts to assist can result in our feeling frustrated that you just don’t “get it.” Follow these Do’s and Don’ts to improve communication with the chronically ill person in your life.
1. Actively listen to us. Give us your full attention without rehearsing what you’re going to say. Let there be silences and pauses in between our sentences without making us feel rushed. Try not to insert a story about yourself or how our pain reminds you of someone else. Listening is one of the greatest gifts you can give us.
2. Be empathetic. Empathy is not the same as Sympathy. Empathy involves perspective-taking, staying out of judgment, recognizing & communicating emotion, and “feeling with” the other person. Empathy fuels connection, but Sympathy drives disconnection. The following video aptly conveys the difference.
Empathy Vs. Sympathy
3. Respect the struggles we deal with. Approach the chronically ill like a soldier returning from war. Recognize that we’ve been exposed to a wider, deeper, more complex presentation of illness than you probably have. Appreciate that we’ve seen and felt things beyond your experience.
4. Please make us laugh if you can. Illness is heavy and laughter is light. We will be most appreciative of every giggle or chuckle you can bring us.
5. Make an effort to learn about spoon theory. People with Chronic Illness have a finite amount of energy (spoons)- far less than you do. When we run out of spoons, we have to rest, replenish, and recharge to get more spoons. This may involve ice-packs, heating pads, or other treatments. Understand if we run out of spoons and can’t accomplish a desired task.
1. Please don’t offer us unsolicited medical advice. We understand you want to help. However we get inundated with suggestions all the time, and it can be very frustrating for us. People tell us to “get more sleep” or “don’t sleep so much.” We are constantly told to try the latest diet and the newest alternative therapy. A lifelong chronic illness requires that we keep abreast of the latest medical research for our disease. Imagine how frustrating it can be, after spending studying our illness, to be told by someone who’s just heard of it that they have found a cure for us. Especially when there is no cure. Chronic illness goes into remission but is not cured. It can be overwhelming for us to hear from family, friends, and even strangers that we would be well if we could just change what we eat, take (or don’t take) a certain medication, start (or stop) a particular exercise. The most helpful attitude you can have is one of open-minded willingness to learn. Ask us, and we’ll tell you. Whenever possible, please refrain from making suggestions. You may only be aware of the advice you are giving us. When we take into account the advice we get from everyone else too, it can just become too much. A good rule of thumb is to trust us. If we want your opinion, we will ask you what you think.
2. Don’t assume we aren’t sick because we don’t “look sick.” 96% of chronic illnesses are invisible. Often we are in some kind of pain even when we’re not complaining. If you want to know what’s going on beneath the surface, just ask and we’ll share it with you. When we feel terrible but put an effort to “pass” for looking okay, it feels great to be complimented. It does not, however, feel great to be told “you don’t look sick, therefore you must not be sick.” That feels invalidating, which is most certainly not your intention.
3. Please don’t second-guess the current treatment plan. Chronic Illness can be very complex. With my illness, the doctors themselves do not agree on the correct protocol. It can be difficult to stay abreast of the latest medical research and make informed decisions about what is best. We have had to become our own patient advocate, weighing doctor opinions against evidence. Sometimes medical decisions may seem counterproductive to an outside perspective. For example, the antibiotics I take often make things worse before they get better. This happens when dying bacteria release toxins into blood and tissues, provoking inflammation (called a Herxheimer reaction) . As ‘professional patients’, we are always evaluating and modifying our treatment plan, weighing the pros and cons of medication tradeoffs and side effects. We struggle to learn as much as possible before making an informed decision. Asking questions is welcomed when your goal is to understand. However asking questions that are really judgmental statements (like “are you sure you should…” or “why do you think it’s a good idea to…”) makes us feel worse, not better. It makes us feel doubted, not trusted.
4. Try not to complain about your medical problems to us. We all have the right to vent about our frustrations, and people without chronic illness are no exception to this rule. However when we are carrying the heavy burden of extreme suffering, it can be very challenging to be receptive to your pain, since by comparison we are dealing with so much more. People who are not chronically ill are far more likely to be empathetic and comforting regarding your flu symptoms. But someone who daily deals with the muscular aches and pains that feel like flu (but aren’t) on top of migraines, neurological shocks, fatigue, limping, and vision problems may struggle to see how hard it is for you. Often when you are attempting to commiserate (“I feel your pain because I had to go to the hospital once and it was horrible”) leaves us feeling like a false comparison was made (when we’ve spent months living in hospitals). It is difficult to listen to you make a fuss about one visit to the doctor when we have to see several doctors a week. They are not equivalent. You want us to feel like you “get it” but ironically the opposite of your intention is created and we’re left feeling like you “don’t get it.”
5. The following phrases are said extremely often to the chronically ill. Your desire may be to cheer us up but that is not what happens. Intention is not the same as impact. Empty platitudes don’t make us feel heard; instead they make us feel misunderstood, which is very isolating. You probably just don’t realize how these common everyday sayings are received or interpreted. Whenever possible, please don’t say any of the following:
It must be nice not to have to work.
When are you going back to work?
I wish I had time to take a nap.
You’re just depressed.
You just need a more positive attitude.
It can’t be that bad.
Fake it till u make it!
It could be worse
Get well soon. (Chronic Illness is a long-lasting condition that can be controlled but not cured.)
It is very challenging to be chronically ill, and also difficult to be our support system. Don’t give up! We need you! You are vital to our sense of well-being and we very much appreciate everything you do to help.
September 26th to October 2nd is Invisible Awareness Week. Share YOUR story with the hashtags #ThisIsChronicIllness and/or #Invisible Illness.
The Author: A Chronic Illness Expert
Kerri Lyn is on disability. She has been diagnosed with 14 different physical and mental disorders including neurological Lyme Disease and Fibromyalgia. She is currently managing 16 symptoms with over a dozen medications, monitored by 11 specialists. She has spent several months sleeping in hospitals. She gave birth to a son with eight birth defects, whose own chronic illness required 47 surgical procedures, chemotherapy, radiation, and a bone marrow transplant.
FOCUS: Feminist Observations Connecting Unified Spirits – Feminist writing about gender, race, class, ability, and other intersections. Consciousness-raising activist. Spiritual Priestess. Body Positivity & LGBT Support. Twitter: @GoddessKerriLyn