We all learned how to be a friend early on but for those of us who know someone fighting a rare disease or chronic illness, it takes some understanding along with a little effort to become a better friend. The challenges faced by the chronically ill are a daily part of life. You may know what you need but the same can’t always be said of your friends or acquaintances.
Engaging in a conversation with someone who has a rare disease or chronic condition requires particular skills. It helps if, in the beginning, you allow them to control the flow of conversation. Take a moment to think about your questions. How are you? It’s often the first thing people throw out in a passing conversation. It’s an easy question, but subconsciously it sends the message: I know you’re ill, but I don’t want to hear all the gory details. The standard answer becomes I’m doing ok when it’s far from the truth.
Every chronic illness has different problems, so if you’ll become familiar with things they face on a daily basis your question becomes How are your eyes doing now? How’s your pain today? Are your hands still giving you trouble? Thoughtful questions like these are a nice way of saying I want to know what’s going on with you.
Stop steering the focus back to you.
Sometimes people need to practice the art of mindful listening. You’ve asked the question so now is the time to LISTEN. We all relate to others by making comparisons with our own experiences. Being empathetic is an art, and mindful listening is hard when your first instinct is to go straight into a story of how the same thing, test, symptom happened to you. Just stop.
The chronically ill need to know they still can be useful in a meaningful way. If you have a problem, they can offer some expertise in give them a call. Ask for advice, send pictures if you can so they can engage.
Our daughter and son-in-law were facing an expensive repair on the electrical system in their home. Gary worked for years overseeing facilities maintenance. When he was healthy, he wouldn’t have given a second thought to running over to replace and repair everything. But by acknowledging his physical limits, he was still able to help them with a parts list and sit in, supervising the repair work done by our son-in-law and his father. A win-win for everyone.
Understand how to offer assistance
Energy levels are always a concern. A project that might have taken a day before their illness can lead to Overview Superficial siderosis progression may have profound... More and frustration if it ends up taking weeks to finish. It’s essential to recognize tasks are going to take longer to complete. If your first instinct is to jump in and take over, stop yourself. Allowing them time to do what they can help them maintain a sense of self. I’m not suggesting you can’t be ready to jump in IF they ask for help but please don’t barge in and take over.
Most of us never give a second thought to jumping in the car. Or you may live in metropolitan areas where public transportation is the norm and driving is a luxury reserved for special events. We live in a very rural area. My husband hasn’t been allowed to drive since his illness being forced him to trade in his drivers’ license for a state I.D. card.
“ You never come to see us, It’s been forever”
He relies on me to drive him for the smallest thing, and this has killed his sense of being self-reliant. It’s not that he doesn’t want to visit family or friends. He just hates being dependent on always needing to ask someone to drive him.
I’ll let you in on a secret about living with a chronic illness. Boredom and isolation will hurt you as much as your disease. For my husband, some days are better, but sometimes he’s not up for visitors. We can make plans, but his symptoms make it impossible to guarantee we won’t have to cancel. Unplanned doctor appointments, a horrible pain day or just feeling exhausted change everything.
Connecting with someone who suffers from a chronic illness doesn’t have to mean a physical visit. Texting, a phone call, sharing on social media has opened up ways of interacting that make allowances for when it’s not a very good day. When we do join activities we may have to leave early, not for lack of enjoyment, it’s a matter of energy. A little understanding on your part helps keep stress and guilt to a minimum.
Taking time to engage in a meaningful and supportive way may not always be easy but what a wonderful way to make a strong statement. I’m here for you, I’m interested, and you are important to me.