Lana Barhum is a legal assistant, patient advocate, freelance writer, blogger, and single parent. She has lived with rheumatoid arthritis and fibromyalgia since 2008 and uses her experiences to share expert advice on living successfully with chronic illness.
When people we love are sick and in pain, we want to wish them love and encouragement, offer support, and motivate them to be hopeful.
Unfortunately, our words aren’t always interpreted in the manner we intend. This is because people with chronic illness do not feel like everyone else, and rather than feeling supported, they often feel misunderstood. Oftentimes the lack of communication can permanently affect relationships.
Chronic pain, fatigue, and other disease symptoms are stressful enough without the added stress created from tense relationships. Here are five things to keep in mind when talking to loved ones living with chronic illness:
1. They need us to believe them. Believe it or not, it is not uncommon for chronic illness sufferers to say they were accused of faking or exaggerating symptoms. When they react to these accusations, they are seen as overly sensitive or believed to have misunderstood a situation. Even statements like, “But you don’t look sick!” can strike a nerve because they imply we don't believe the person. When a chronically ill person says she is hurting or feeling extremely tired, she needs us to believe she is telling the truth.
2. Save the suggestions for fixing their illness. People with chronic illness have seen countless doctors, taken numerous medications, and done endless research on their illnesses. They don’t need to know about remedies or cures we think will help them. If the cures worked, they would have tried them by now and/or their doctors would have suggested them.
3. They did not bring the illness upon themselves. People with chronic illness didn’t choose to be sick, nor do they want to stay sick. Moreover, having a negative or positive attitude has nothing to do with getting sick or getting sicker. Chronic illness offers no discrimination; it doesn’t care about a person’s age, race, sex, or what healthy or unhealthy choices he made prior to getting sick. Most chronic illnesses have no explanation for their triggers, so please don’t suggest that a chronically ill person brought the illness upon his or herself.
4. Understand their disability can be invisible. According to the US Census Bureau, there are at least 26 million people in the United States living with a severe disability. Only seven million of the 26 use an assistive device, such as a wheelchair, cane, or walker. Therefore, we cannot assume a person does not have a disability simply because we can’t see it. Further, we should never take the position that someone is too young to have a disability, invisible or not. People with chronic illnesses have debilitating pain, fatigue, weakness, and/or cognitive impairments, and these symptoms, while invisible, affect daily activities such as working, running errands, housework, and spending time with loved ones.
5. We do not know what they are going through. Unless we are living with a chronic illness, there is no way we can begin to understand what a person is going through or the extent of his pain and symptoms. And while we want to be compassionate and encouraging, it can be perceived as if we are minimizing someone’s suffering when we say we are tired too or that everyone wakes up with aches and pains. If we try a different approach like, “I cannot imagine what you are going through,” we appear more genuine.
Practice non-illness talk
Chronic illness may be something that some people have to live with, but it is not their identity. People with chronic illness don’t want to be seen as “just” sick. They are so much more than that. They are smart, funny, tough, creative, and talented—just like everyone else. They are worthy of being loved and supported.
While we all need time to understand the impact that chronic illness has on the sick person and their loved ones, treating them as we would want to be treated makes the road to acceptance less stressful for everyone.