A diagnosis of chronic illness is life altering in ways you often do not anticipate initially. When you first receive the news, usually the focus is on your health care and treating the condition. You are vaguely aware that you are in it for the long haul, but often that does not sink in right away. For you and everyone in your life, the early days are consumed with processing the information that you are seriously ill.
Eventually, the dust settles and that original horrible anxiety eases a little. You realize that this is something you are going to have to incorporate into your everyday living. This is a challenge. For one thing, human nature loves denial. Part of us wants to just pretend nothing is wrong, thank you very much. And the American culture values youth and health. Most Americans are unprepared to deal with the illness or infirmity of ourselves or someone else. When people do not know what to say or do they become uncomfortable. When people believe a situation will be uncomfortable, they will avoid it. Which is why so many people may migrate out of our lives when we get sick. They are not bad people or even bad friends. They just don’t know how to deal with it.
As someone with a chronic illness, the last thing you may want is to become an activist. But activism takes all forms. Quiet, one-on-one influence can be just as effective as waving a sign. Every relationship you have is an opportunity to teach someone about how to be a friend to a person who is chronically ill.
Some of our friends will have been along on the journey to diagnosis with us. These are often our most special and close connections. Emotionally, it can be very difficult for someone who cares about you to see you sick, suffering or in pain. So understanding needs to go both ways. Make sure you talk frequently about what you are both facing. Thank them for standing by you and acknowledge how hard it is for them.
It is important for friends to have information about your illness. Offer to provide literature if they are open to that. Knowledge is the best way to keep things in perspective and misconceptions about your condition can be clarified. Factual, unbiased data will help them to be clear on how the illness might affect you and what expectations to have about its course.
Help your friends understand your limitations. For many of us with a chronic illness, more than one activity in a day is out of the question. In the past we might have gone for dinner and a movie, but now we have to pick one or the other. The concept of an energy bank can be a useful analogy.
Illness uses up our resources now. Rest is the commodity that we put into the bank, but we can deplete that rapidly these days. Things as simple as taking a shower, getting dressed and walking to the car can be enough to knock us off our feet. Some of us need assistive devices that take a lot of work to use, such as canes or walkers. It is essential to communicate this to those who care about us. It helps them understand we are not being lazy or uncooperative by not being up to as many social events as before. It is just that our account in the energy bank is overdrawn.
Because people are human, you are going to see sides of them you never did before. Some are going to humble you with their support and generosity. And some are going to blindside you with their insensitivity. This latter group is your frenemies – individuals who appear to be friends but in fact are subtle enemies.
They most likely do not even realize it themselves. They truly think they are being helpful. But these are the people who are gently critical: “Really? You can’t come? But you were able to go out the other day.” Or they imply you are not trying hard enough to get better: “You know, my cousin’s wife had what you had. She tried yoga and she was symptom free in a month.” Or the ever popular “But you look so good!”, implying you must not be that terribly sick. Or maybe you are exaggerating!
Some frenemies are tolerable. Their good outweighs the bad. It is always worth it to give people a chance to learn from you about what it is like to live with a chronic illness. They might rise to the situation as they become more aware. Or they may continue with little digs. Listen to your feelings. If a person always makes you feel worse after being with them than better, it may be time to let that friendship go. In the past you could give energy to these encounters without a thought. Now that resource is too precious to waste. When you have a chronic illness, it is so important to surround yourself with positive and encouraging relationships.
True friendship is give and take. Depending on the circumstances, each individual gives or takes a little more at different times in a relationship. As the people around you learn that you are still the same person, despite your illness, the specter of being sick will fade. You will not be a Sick Friend and a Healthy Friend, you will just be friends. And you move onto a whole new level in your friendships.