If you are fighting a battle with a rare disease or are chronically ill, you are familiar with the challenges you face daily. Sometimes the same can't be said of your friends, family or acquaintances.
This blog post is for everyone who knows someone fighting a battle, not just with superficial siderosis but any rare or chronic condition. No one ever intentionally wants to hurt someone's feelings or cause them distress. Intentional or not it happens. I hope you can take something from this post and help yourself and your friend by becoming more aware, present and...
mindful.
Learning to Listen
Sometimes people need to practice the art of mindful listening. 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?" is often the first thing people will 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 learn a few 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?". This is a simple way of saying "Hey, I want to hear what's going on with you."
Stop steering the focus back to you.
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.
This often happens to caregivers too. I tried having a conversation with someone who wanted an update on Gary's condition. Every turn of the conversation led back to how they had "that same test" and what their results were. I walked away having never finishing a thought or giving an actual update. For this moment in time, it's not about you. The conversation will ebb naturally, and then it's your turn to share. Believe me; we will be happy to listen.
Recognize
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 a big concern. Gary will plan a project that would have taken a day before his illness. Frustration levels are always high when it ends up two or three 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 your friend or loved one's task, stop yourself; allowing them time to do what they can by themselves first helps them maintain a sense of self. Nowhere is it "set in stone" you can't be ready to jump in IF they ask for help. Nothing says "you have no value" louder than barging in and taking over.
Independence
Some 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. Driving is a luxury reserved for special events. Gary hasn't been allowed to drive since 2015. He celebrated his birthday this year by being forced to turn in his last drivers' license and be issued a state I.D. card.
" You never come see us, It's been forever"
We live in a very rural area of Texas. The closest local grocery is 10 miles from our home. It's an hour drive to his primary care doctor. He relies on me to drive him for even the smallest thing. Our neighbors are great, always willing to pitch in if he wants to go somewhere but for Gary, this has killed his sense of being self-reliant. It's not that Gary doesn't want to visit family or friends. He just hates being dependent on asking someone to drive him.
Stay Connected
Our nephew dropped in yesterday, so we enjoyed an overdue visit. We understand his schedule is full; juggling the responsibilities that come with a raising a young family and building his new trucking business. Often he just texts, "Hey Uncle Gary, What're you doing? " but it makes Gary happy to know he's interested. Gary loves it when someone takes a minute to connect with him.
I'll let you in on a little
inside information about being chronically ill
boredom and isolation
will hurt you as much as your illness
For Gary, some days are better, but sometimes he's not up for visits. We can make plans, but his symptoms make it impossible to guarantee we won't have to cancel. Unplanned doctor appointments, having a horrible pain day or just feeling exhausted always spoil things. Planning even a short trip has given a new meaning to spur of the moment.
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 makes allowances for when it's just not a very good day. When we can join activities, often we'll have to leave early. It's not that we don't have a good time it's just a matter of energy.
