One out of three people have ongoing - or chronic - illness to deal with ever day. So what exactly is a chronic illness? Very simply, it's a group of health conditions that last a long time. In fact, the root word of chronic is "chronos," which refers to time. And it's not just the length of time sufferers have to deal with a chronic illness, it often takes a long time for an accurate diagnosis followed by an even greater amount of time finding the right cocktail of medication to alleviate symptoms. So whether it is arthritis, asthma, diabetes, lupus, lung disease or an autoimmune disease every patient faces the same challenge of learning to live in pain, with a long term condition and trying to find faith, direction and hope.
So what can we do and how can we help?
As friends WE need to develop a greater sense of awareness and understanding of the disease. We must understand is that even if a friend looks good, they are actually trapped inside a body often in GREAT pain that can no longer function as it used to. Simple chores like washing their hair become huge challenges often causing exhaustion for the rest of the day. We must resist the temptation to make a visual diagnosis. Once we 'get it' that they might look good but are actually in great pain we can begin to be of support. It's because we can't 'see' anything that we often expect too much and are less patient and understanding than we should be. We unintentionally make our friend feel as if they are being wimpy which adds to the stress.
Well, as patients with any chronic disease feel like their life is out of control, one of the worst things we can do is to take over the patient's life and voice our opinions. Try to give your friend some emotional space to make decisions about their care and treatment. It's OK to help them get information which will lead to them making better decisions. It's also a good idea to learn about the disease yourself. Go to the library or get on the internet and become familiar with the vocabulary about the disease. Knowing that you made the effort to become informed will show how much you care.
If it's a long term illness visits and telephone calls are always appreciated IF you can comfortably chat about subjects other than illness and treatment. Oohing and Aaahing and requests for detailed information only reminds your friend that people are feeling sorry for them. Even sick people enjoy a good bit of escapism gossip! Don't feel you have to talk about the illness.
Try not to marginalize symptoms or side effects even though you may have the good intention of trying to make your friend feel less worried. It doesn't help and may make them not want to talk about it at all when asked. A few months ago a friend of mine had a near fatal allergic reaction to a new drug therapy. A few days into recovery a friend asked whether she was allergic to fish because she gets a rash when she eats shrimp from a can. It's the sort of comment that makes friends want to shut down.
Continue to include your friend in work projects or social occasions. They will let you know if the commitment is too much. Or simply invite them over for lunch or coffee. It's a gesture which they can accept or decline. If they decline don't take it personally. Some days people want to be social and other days they don't. And that's OK.
Don't offer advice about other doctors, treatments or hospitals unless they ask. They are the closest to their disease and are conversing with many specialists. Give them space to listen to all their advisors and make decisions.