Part 2: My Story – 13 Useful Things Guaranteed to Help the Chronically Ill

In last week’s blog, I told you about my personal struggle with chronic illness and pain. If you haven’t had a chance yet to read or share it, please do.

As a family member or friend of someone who is chronically ill, you play a vital role in that person’s life. Those who battle pain each day can’t do it on their own. They must rely on others to function.

My hope is that you will be able to glean some tips from this post that will help you better understand and help a chronically ill loved one. While everyone’s experience is a bit different, there are general principles that apply to just about everyone.

I encourage you to give them a try and watch how well they work.

  1. Help us to remember things.

The medicines that we take to combat the pain in our bodies have a number of side effects. Three of the side effects that almost no one can escape are the brain fog, inability to think, and memory loss. We find ourselves constantly having to write things down to remember them.

My family members are learning to remind me multiple times about important things I need to do. They leave me more notes now than ever! That’s ok. All of us who struggle this way are extremely grateful for all the extra reminders.

  1. Encourage us when we need it.

No matter how strong your faith is, dealing with illness and pain has a way of sapping the life out of you at times. Statistics confirm this. According to WebMD,  more than 50% of people who suffer from chronic pain experience some type of depression.

Before my pain, I was type A and a very driven person. It wasn’t unusual for me to work 14 hours a day. I loved it! It used to energize me.  I now have some days where I can hardly get out of bed. On a good day, I might be able to work an hour or two if I can rest before and after. Many people with chronic illness have similar experiences.  We spend a good part of our day in bed and try to make the most out of the hours when the medicine is working and our pain comes down a little.

My family and friends have been such an encouragement to me. I have the most amazing wife! She has gone above and beyond for me and for our family. She is sympathetic and knows when I need a boost.

Those who face pain and illness like me need people to rally around them. This is what keeps us going!

  1. Keep asking us to go with you when you go out.

We might not be able to join you for a lot of your extracurricular things, but we do like to feel included. The fact that you want us to be a part of your fun means a lot to us.

  1. Come with us to our doctor appointments.

Going to the doctor is a regular event for me and others who battle chronic illness. It’s so important to have someone to advocate for us. Why?

A big reason in my case is that there has been no doctor that can fix me. At this point, the doctor is doing his best to help me control my pain.

We need someone with us who can think clearly and ask the questions we have ready for the doctor. Remember, for many of us, we are dealing with brain fog.

Without someone with us, who will remember what the doctor says? We need someone who can tell the doctor, “The current plan is not working. Help us make the changes we need.”

  1. Continue to pray for our healing and for grace for each day.

We cherish your prayers and couldn’t make it without them. We realize it’s easy to forget about us in the midst of all the busyness of your day. Many of us were there once as well.

Thanks for remembering to pray. We need extra grace to get through each day. There are times when we feel hopeless and think about the fact that we could be like this the rest of our lives.

Please pray that God will heal us and that if he chooses to make us wait that he will give us the grace we need to endure another day. Your prayers matter!

In fact, the Bible says in Revelation 8 that the prayers of the saints (you and me) fill golden bowls in heaven. As the bowls begin brimming over the angels throw down the fire of God.

While this seems a bit “out there”, it is representative of God’s power at work in our lives here on the earth.

As you pray for your loved ones who struggle with chronic illness, your prayers accumulate in heaven and eventually move the hand of God. Wow! The Bible also says that the “The prayer of a person living right with God is something powerful to be reckoned with.” James 5:18 MSG

  1. Let us bring up our illness in conversation.

We live with the symptoms of our illness every minute of every day. It affects us not only physically, but emotionally, psychologically, and even spiritually. There are times when we really need to tell someone about our experiences with it.

Most of the time, however, we would rather not talk about it. We are trying to live our life and be as “normal” as possible despite how we feel.

  1. Please refrain from giving us any trite Christian phrases.

Sometimes, in an effort to say something spiritual, we as Christians put our foot in our mouth. I can’t count the number of times I’ve heard people say that “God will not give you more than you can handle.”

Can someone please show me where this is in the Bible? If we were not given more than we can handle, there would be no need for faith.

Another tough one to hear is “Everything happens for a reason.” While this is true, we, as humans, don’t always know why things happen the way they do. I honestly don’t know if it would help me at all to know why God is allowing me to endure so much pain.

We don’t need help understanding God and his ways. We need comfort and we need prayer. ” quote=”We don’t need help understanding God and his ways. We need comfort and we need prayer. Remember Job’s friends?

They got it right…for a while. They just sat with Job and didn’t say a word. However, as soon as they opened their mouth, their words did nothing to help him.

Please don’t misunderstand me. God will put special people in the lives of those who suffer and use them to bring peace and strength. I have a handful of people who help me in this way.

These are the people I call when I need prayer and feel hopeless.

  1. Don’t let our health condition stop you from doing the things you love.

The last thing we want is to be a burden to our families and friends. We want to see you continue to live your life and thrive.

Last year an opportunity came up for Cheryl and me to go with our kids and her parents to Disney World. I knew that there was no way I would be able to walk through the parks each day. So, my family went each day to a different park and I stayed back with Cheryl’s mom.

It was hard to not be a part of the memories they were making, but I was so glad that my illness didn’t prevent them from having a great time.

  1. Just because we look fine on the outside doesn’t mean that we are not in pain or discomfort.

While some of us can’t hide our disabilities, many of us can. Either way, we do all we can to look and act normal. This does not mean that we can do everything a normal person can.

In many cases, we push the limits of our illness for the sake of having fun and good fellowship.

Please don’t tell us we look good after hearing about the struggles we have recently had. Just because we look good does not mean we feel good. Here is a great article I found called 15 Things not to say to a Person With Chronic Illness. The same girl who wrote that article also published one called 10 Things You Should Say to Someone With a Chronic Illness. Both are an excellent read.

  1. Please don’t tell us you have the cure for our disease.

We really do appreciate you trying to help. Telling us you have the cure for our disease feels to us like an oversimplification of our illness. It also makes us feel like somehow we failed in our journey to find a cure.

Please know that we have most likely seen some of the best doctors and tried just about every therapy out there. It’s ok to let us know if you have found something that you think may help us. Just tell us about it and don’t pressure us. Believe me, we’ll look into it to see if it could help us.

  1. Don’t look down on us because of how many medications we take.

Yes. We take a lot of medications. Some of the medicines we take are for the side effects of other medicines. Please don’t judge us until you have walked for a while in our shoes.

Did you know that everyone experiences pain differently? This has actually been proven by brain-imagery. It has nothing to do with how tough you are or your ability to practice mind-over-matter. Here’s a great video to explain how it all works.

  1. We don’t ever want our disease to become our identity.

As much as you hear some of us talk about our illness, most of us don’t want our disease to become our identity. This is something we have to fight regularly. It’s easy to fall into this because our pain is something we deal with all the time.

We want more than anything to just be a dad, mom, husband or wife. Please help us with this. We fight against this by getting out of the house and doing normal things like everyone else (going out to eat, going to a movie, going shopping, etc).

Those of us who are Christians ultimately look to Christ for our identity. No matter what comes our way, we are still children of God and nothing is different in God’s eyes. We look to Jesus for our greatest encouragement, purpose, and direction.

  1. Thank you for everything you do to help us.

We probably don’t say it enough, but we are extremely grateful for all the sacrifices you make for us. We see all that you do to help us and it really makes a big difference in our lives.

While we would never want anyone to experience what we do, we hope to be able to return all that you’ve done for us back to you.

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For information about Ken’s website, Families of Influence, please click here:

 www.familiesofinfluence.com

Questions & Comments

If you would like to ask questions or have comments regarding this blog post,
please feel free to call me at 540-349-5814 or email me at chaplainliz@scsm.tv