The Importance of Language in Communication:

By Julie Stankiewicz, M.A., CARE President & Founder

At CARE, we know that many people suffering from chronic and invisible illnesses are severely lacking in the support that they need. Because their symptoms cannot be seen by others, their pain, fatigue, and other challenges are often misperceived as less severe than they truly are, or even incorrectly attributed to psychological causes. They face misunderstanding after misunderstanding. That’s why we’ve created this resource to aid in communicating with family members and friends who are experiencing chronic and invisible illness. If you are reading this, we want to say thank you for learning to support and understand people with chronic and invisible illness, who desperately need more care! And if you are experiencing chronic and invisible illness, please feel free to share these tips with others in your life to help them understand your experience and communicate with you in a more compassionate way.

Never define a person by his or her illness. The illness the person is suffering from is not a reflection of his or her personality, character, or strength, but rather a situation that the person is enduring. Try talking about the illness as an experience rather than a description of the person. In real life, you might put this into practice by saying, “I’m so sorry you’re going through this.” It can be well-intentioned, but hurtful, to say things like, “I’m sorry you’re such a sick/weak/disabled person.” Framing the illness as an experience rather than a personal attribute may help the person to feel better about themself and their life, as confirmation that the illness is not who they are, and that other people do not equate them with their symptoms. 

Even if the person experiencing chronic illness shares openly with you, talking about a variety of topics other than the person’s illness can help the person to feel more whole. People experiencing chronic illness may feel that their symptoms are overtaking their lives, and may have to give up interests and hobbies that they can no longer do. Talking about their current interests, the activities they hope to return to, and even your own life, can help bring a sense of greater wholeness.

Let the person suffering from chronic illness share their experiences at their own pace, without excessive inquiry. If a person has been experiencing chronic and invisible illness for a long time, it is likely that they have encountered cruelty, insensitivity, and disbelief that their symptoms are even real – from medical practitioners, friends, and potentially even family members. For that reason, many of us have stopped sharing our thoughts, feelings, and painful experiences. However, the people with whom we can share our illness experiences with are treasures. If you can gently listen and be there for a person experiencing chronic and invisible illness, you can have a dramatically positive impact on their life.

Listen with empathy, and without trying to change the person’s feelings. Overwhelming grief, anger, and other intense emotions are a normal part of serious, chronic illness. While it can be very difficult to hear a loved one express such powerful emotions, you can be instrumental in allowing those emotions to naturally dissipate simply by listening. Statements such as, “I’m here for you,” “We’re in this together,” “I’m so sorry that you are experiencing this pain,” or “I wish you could be free from this,” express such empathy. Clinical psychologist Dr. John Gottman uses empathic listening and statements such as these for helping spouses to support each other during difficult times. However, we feel that the same principles of communication apply, and may be extremely beneficial not only for partners, but also in other close relationships with family and friends in the situation of chronic illness. 

Once the person feels genuinely heard, a message of hope and optimism may then be well-received and helpful.

Academic research shows that nearly all people with chronic and invisible illness have been dismissed, treated cruelly, or even abused in conventional medical practice. Some patients keep searching until they find practitioners with whom they can form meaningful partnerships and positive relationships. Their experiences of going to a doctor, both positive and negative, are likely to be entirely different from someone who has not experienced chronic and invisible illness. 

Because visits to physicians can feel so disempowering, we feel it is important to frame conversations using the patient’s perspective as the most important viewpoint. After all, the purpose of medicine is to help the patient, and in the end what matters is that they feel better! Instead of asking questions, such as, “What did the doctor say?” we recommend asking questions such as “What do you think about the doctor? Did he or she listen to you, respect you, and help you? Do you feel he or she is helping you to feel better?”

Be flexible. People with chronic and invisible illness often experience symptoms that change on a day-to-day basis, and as such, their abilities to function also vary on a day-to-day basis. Many feel overwhelmed by expectations of others and misunderstandings about why they can do some activities, but not others, or why they are well at certain times, but not at other times. The combination of invisibility and the changing nature of symptoms may lead others to think that they are faking or exaggerating, when that is not the case at all! Most of us with chronic and invisible illness are actually adept at hiding how severe our symptoms are! So if you know someone suffering from invisible illness who may feel the weight of social expectations they cannot easily bear, let them know that it is okay if they cannot go on a vacation with you, come to your party, celebrate a holiday with you, etc. You can say, “I understand if you can’t make it. You are important to me. We can celebrate another time, and in another way that you’re comfortable with.”

Avoid making reference to the person’s age in relation to their illness, in statements such as “You’re too young for this!” Or “This is a natural part of getting older.” Chronic illness occurs in children, adolescents, and adults of all ages. A statement such as “You’re too young for this,” often followed by “When I was your age, I was [insert fun activities, career and academic success, starting a family, etc.]" may elicit comparisons to others in the same age group who are healthy, which can create feelings of inadequacy and depression. We are each on our own journey, and each individual experiences unique life challenges at each stage. While well-intentioned, we find that these statements do not provide benefit, and that it can be harmful, to compare younger people with chronic illness to others in their age group. 

A statement to someone in middle or older age, such as, “This is just part of getting older,” dismisses the legitimacy and severity of the illness, and shows a lack of understanding, as these types of chronic illness are not part of the natural aging process.

Unless you know a person very well, avoid discussions of the person being “disabled” as well as whether they should or do receive disability income. These are very sensitive and personal terms and topics. Some people with severe chronic illness embrace the term “disabled,” and that is their choice to do so. Other people, even though they may not be able to perform all of the “normal” tasks of daily life, do not consider themselves “disabled,” and that is also their choice on how to define themselves. The process of seeking disability income can be traumatic and distressing to people with chronic and invisible illness, as they must constantly prove the reality of their symptoms, while at the same time, trying to become well. Many are denied benefits even after struggling through this traumatic process, because their illnesses are not well-understood and delegitimized as a result.

Avoid offering simplistic solutions to long-term, complex, chronic problems. For example, if a person has suffered from incapacitating fatigue for years, suggesting that they “Get a good night of sleep and will feel better,” undermines the seriousness of the person’s illness, and potentially the years of work they may have already done attempting to resolve their fatigue. Instead, assuming they want to share their experience, you might gently inquire about the strategies they are using to help themselves, and express support. Many of us with chronic and invisible illness have learned that our health is our own responsibility, and are continually learning about health, wellness, and self-care. Expressing interest and admiration at the self-care strategies they have developed may be affirming and empowering.

We hope that if you are suffering from chronic and invisible illness, you have found these tips to be affirming of your experiences. And we hope that if you are trying to help someone else, that these tips are useful to you. At CARE, we are here for you! Please feel free to connect with us for greater support.

This article represents the opinions of the author and is for general informational purposes only. The information presented is not a substitute for professional care. If you or someone you know is suffering severely from emotional pain related to chronic illness, please seek professional mental health care from a licensed provider or call the Suicide and Crisis Lifeline at 988.