How To Encourage Someone With A Chronic Illness (Part 4)

In my earlier posts on this subject of giving encouragement, I've focused on things that need to always be kept in mind when it comes to your relationship with a person with a chronic illness. In fact, some of my advice could have just as easily been for a post titled, "How To Not Discourage Someone With A Chronic Illness." This final "chapter" of the series is the fun one. At least, I think it is. The first three parts (you can check them out here, here, and here) were definitely much more intense to write. But this fun one's for those of you who want to go the extra mile and do something.

9. Do something tangible.

The sky's the limit with this one. This list is nowhere near comprehensive. But I hope that it gets your creative juices flowing. :)

Hugs...but only if you're not sick! If you are sick, just say, "I'd give you a hug, but I'm sick and don't want to pass it on to you." (Btw, if it's flu season, please don't be offended if they back away from a hug. Also, you might want to first ask if a hug would be okay. They may not be a hugger. And even if they are, they might need a chance to warn you that they're hurting a little extra that day and need a gentler hug.)

Bring them some coffee or food - homemade or store bought. I'm not the type of person who asks for stuff like this, but if you offer, I might just take you up on it! Make sure to ask them if they have any dietary restrictions first. :)

Invite them over to your house for a meal. My husband and I live far away from our familes. So when I was first diagnosed with lupus, it was a huge blessing when people invited us over for a meal. It gave us one less meal to worry about during a very overwhelming time. It was also so wonderful to be able to be with other people. The months leading to diagnosis were difficult, and having a social life was not possible. So these post-diagnosis meals were very special and I don't think I will ever forget any of them.

Offer to help with a chore or errand. Doing dishes, shoveling snow, raking, cleaning, laundry...I think you get the idea. Living with a chronic illness is hard work! Sometimes, getting stuff done around the house or running to the store can feel like too much when you're just trying to get through the day-to-day. And it's really easy for the discouragement to pile up along with the messes and growing to-do lists. A helping hand for even the smallest task can go a long way to give someone the boost they need.

Small gifts or care packages. It doesn't need to cost much. Don't underestimate how encouraging something as small as their favorite candy bar or a box of Kleenex (the good kind with the lotion in it) can be. Very recently, I was shopping at Target when a purple wreath caught my eye. I took a picture of it on my phone and posted it on Facebook with this caption:

I want this so bad for Lupus Awareness Month!

Does anyone want to buy it for me?

I was kidding. I thought my silly Facebook pic would be the closest I would get to displaying that wreath. I really wasn't fishing for someone to actually buy it for me. Really! But later that day, a dear friend sent me a long message with beautiful words of encouragement. She ended it with this: "PS - The wreath is ordered and on its way to your home."  I happy cried.

Speaking of purple...

Show support for them during awareness days or months. Last May, I asked my friends to wear purple and take selfies for Put On Purple Day and Lupus Awareness Month. Every time I got tagged on a photo, my day got brighter and brighter.

I've mentioned this before, but I'll say it again: Write a thoughtful note or card. It might even become something they treasure!

And now...drumroll please! Here's my very last tip in this series!

10. Ask.

Everyone is different. Words or actions that encourage one person may fail to encourage another. So if you've read my numerous posts on the subject and still feel at a loss, simply ask. If you don't know what to ask, here's a few ideas to get you started:

"How can I encourage you right now?" or "Is there anything I can do for you in addition to praying?" Just being asked lets me know that I am loved and not alone.

Here's the problem: If you want to do something more tangible for me and you ask me questions like this, I will typically draw a blank and say, "I think I'm all good," or "There's probably something but I just can't think of it right now." I'm not trying to be rude. I promise! I'm just really bad at answering questions like this on the spot. So if you want to do more to encourage someone, you might need to be a little more specific...

"Have you eaten? Can I bring you some coffee or any food?" 

"Would it be okay if I come over to help you [insert chore or errand]?" For this one, make sure you do it in a way that is gentle. Choose your words and tone carefully so that you don't come across as demanding, demeaning, or intrusive. Also know that the person may initially say "no" when you ask, but they will remember your kindness in offering. And there might be a day when they feel like they have used up the last of their strength, and just knowing you have an offer on the table to help with the dishes may be the lifeline they need.

"Would you like me to help watch your kids tomorrow so that you can take a nap?" I don't have any kids, but I've heard from my friends who are parents that they don't get any sleep. Naps are really great for people with chronic illness, but it can be hard to make them happen. So if you know a parent with a chronic illness, I bet that enabling them to take a nap would make them very happy!

- - - - -

I hope this post gave you some good ideas. I'm sure that there are a lot of things that I didn't mention. What are some of your ideas? Feel free to leave a comment. I'd love to hear from you!

How To Encourage Someone With A Chronic Illness (Part 3)

"What's the best way to encourage someone with a chronic illness?" When a friend asked me this question, I had no idea how hard it would be to answer! I started to answer it here and here. Today, I want to get to the heart of the matter and take a deeper look at emotions.

6. Celebrate with them. 

Celebrate?!? What?! How can you celebrate with someone who has a chronic illness when...they have a chronic illness?! And herein lies the problem. Just because someone has a chronic illness does not mean that they have nothing to celebrate! (By the way, if you think that the above scenario is outrageous and unlikely, I've been on the receiving end of such an attitude...It's very uncomfortable.) 

It can be easy to imagine being there for someone with a chronic illness during the hard times. But they need encouragement in the good times as well! Nothing is more of a downer as when I am taking a moment to celebrate something great in my life, and someone looks at me with pity and says, "I'll be praying for your lupus." WHAT?!? Are you kidding me?! If I just told you something good, even if it's a little thing, don't pity me! Celebrate with me! Sometimes, having a good day can be a big victory, so don't brush those days under the rug as though they don't matter. Celebrate the good days! Celebrate the good things that happen in the midst of bad days! Celebrate the happy things that have nothing to do with illness! When you celebrate with someone who has a chronic illness, you empower them to have dignity, to see their worth as a person, and to experience the joy of living.

(Please note that there are many people who are depressed as a result of or as a symptom of their chronic illness as well as many who are not. Treating someone who is depressed as though they just shouldn't be or with a dismissiveness towards what they are experiencing just adds to the discouragement. The flip side is true: Treating someone who is not depressed as though they are can also be a cause for discouragement.  Just don't assume either way and make sure to take the time to listen.)

Now back to the business at hand. Celebrating with someone who has a chronic illness depends on a basic understanding...

7. Understand they have a full range of emotions.

Most of the time, I'm smiling. It's not a facade. I'm a genuinely, very happy person. I tend to be happy most of the time even when I'm in extreme pain or going through a lot. I am also an extremely expressive musician to the core of my being. My ability to express such deep emotion on stage flows from a life that feels deep emotion on many levels in all aspects of my life. I experience life to the fullest with joy amidst all the highs and lows. Yup. Joy. And lows. There are lows. (Who doesn't have lows from time to time?) So you know what hurts me? It hurts when someone sees me on a day when it's hard to smile and says, "I think you need therapy to learn to cope." Really?! I am in intense pain 100% of the time, I'm bubbly and happy 90-something% of the time, and you think I need to learn to cope? Let me feel all my emotions without guilt!!!! I'm not saying that having lupus gives me a pass to act however I want or to be a Debbie Downer, but don't make me feel like there's something wrong with me just because I go through some hard times.

People who live with chronic illness are not any one emotion 100% of the time. No one is! Just because they are sad one day does not mean they are sad all the time and need counseling. Just because they are happy most of the time doesn't mean they don't ever cry or go through hard times. Just because they exhibit strength most days does not mean that there aren't also times when they are weak. Just because they are smiling does not mean they are not in pain. Just because they are in pain does not mean they are also emotionally hurting. If they are having a string of bad days, they may be just one day away from experiencing a good one. And if they're having a string of good days, they may be just one away from a not-so-good day.

So what do you do with all of this understanding? You empathize. Empathy isn't just something you do when things are going bad. So empathize during the smiles and the tears, the hard days and the good days, the sad times and the happy times. But don't stop there...

8. Live life with them.

A lot of the experiences that have encouraged me the most have had little or nothing to do with lupus. I'm talking about the times when people have simply lived life with me. It can be anything from church, a football watching party (Can you tell that I'm not really a sports person?), or a dinner out with friends. Even though I'm a hardcore introvert, being with people helps keep me going. When I'm alone, it's really easy get wrapped up in my pain or how tired I am. Time alone is the perfect incubator for insecure, sad, and even some scary thoughts. I can get pretty self-absorbed when I'm by myself. Too much time alone isn't good for my spirit or my health. But living life with other people has a way of helping me feel some sense of normalcy and making me feel vibrant again.

Before I continue, let me explain what a sense of normalcy is not. A sense of normalcy is not the same as acting as though everything is completely normal. For me, normal is what my life was before I had lupus. If I try to act like my life is normal, then I'm living a lie. The moment I found out I have lupus, normal went out the window.

A sense of normalcy is the feeling that I am still me. The feeling that life isn't over. The feeling that I can have relationships, and fun, and conversations that go on and on until too late at night. The feeling that I can still laugh. (I tend to laugh more when I'm with other people.) The feeling that I can still tell awesome stories. The feeling that I can still be a friend. Even the feeling that I can still be a useful part of society. I can't make myself feel these things on my own. These are things that are hard to feel. And they're so easy to forget. But when I'm with other people, I start to remember. And when I remember, I start to feel like me again. And what could be more encouraging than that?

Unburdening

I made a major change in my life yesterday. Every since I was diagnosed with lupus, my eating habits, my daily pace, my address, and my job have all changed. But my everyday, go-to bag has not. I've gotten other bags to add to my collection, but they are all too-large-to-call-a-purse, hurt-your-back-and-neck-and-shoulders, and carry-everything-you-possibly-can-including-a-small-library, sized. Until now. 

Yesterday, I decided that I'm done carrying heavy burdens everywhere I go. I decided to "upgrade" to something much smaller. My new purse - it really is small enough to be called a purse - has room for my cellphone, driver's license, debit card, keys, and pillfold. That's it. Five things. Only the essentials. Nothing more. It's liberating. And scary. 

What if five things aren't enough? What if I'm out and I don't have something with me that I neeeeeed?!? What if something bad happens because I didn't have everything with me? 

I had gotten used to my burden. It was my safety blanket...a very painful one, but a safety blanket nonetheless. It made me feel secure to have everything with me "just in case." But sometimes, you have to let go of the security blanket. Sometimes, you have to look your "What ifs" in the face and say, "The world will keep moving, my life will keep going, and it's going to be okay."

How To Encourage Someone With A Chronic Illness (part 2)

I'm doing a series on how to encourage someone with a chronic illness. (You can read part one here.) Part one laid down the foundation. Today, I want to give some cautionary tips. Being an encouragement is just as much about not doing wrong things as it is about doing good things. Before you read on, I just want you to know that it was extremely difficult to write this without sounding jaded. I certainly hope that I'm not. But in the two and a half years I have had lupus, I have been hurt by many well-meaning people trying to encourage me. It is not my intention to blame anyone. It is my intention to equip those of you who have a genuine desire to be an encouragement.

So allow me a moment to give you a glimpse into the world of someone who lives with a chronic illness: It has taken a lot of intentional work to protect myself from becoming jaded. In fact, when I was newly diagnosed and started googling lupus, I was overwhelmed by the vast number of people with chronic illnesses who are jaded, angry, and bitter. And I made a decision from the very beginning that jaded, angry, and bitter would never become words that would describe me. And that is why I started blogging. I want to be a voice of encouragement and joy in the midst of all the negativity and hurt. And if you're reading this, I'm guessing that you want to do that, too.

So, let's build on our foundation:

4. Consider the gravity of your words before you speak or type.

Words are powerful. They can bring hope, strengthen faith, and breathe life. They can also bring discouragement, condemnation, and unnecessary guilt...even when the speaker means well. I'm sure you know the saying, "It's the thought that counts." It's typically used in reference to gift-giving. But it applies to words of encouragement as well. Too many people try to be the voice of encouragement without putting any thought to it. A person living with a chronic illness doesn't need hollow or impulsive words. It's the thought that counts! So, think before you speak (or type). And when the thoughts come, take a moment to consider them. The first thoughts that come to your mind may not be the best for the moment. Don't underestimate the power of words that have been carefully considered!

Now, if you can't think of anything to say that seems appropriate, remember that foolish words are not better than silence. If you feel like you really need to say something but all the words you can think of seem inadequate, something as honest as, "I'm sorry I don't have any good words," can be encouragement enough. Sometimes, words aren't necessary. Sometimes, just knowing that someone wants to encourage me is exactly what I need in the moment. The important thing is not that you had a chance to have your say. The important thing is the kind of mark you leave on the person. Have you left an imprint of encouragement or a wound they must now recover from? 

Sometimes, to better consider our words, it helps to use pen and paper to write a letter. It doesn't have to be fancy or in any formal letter form. It just needs to be thought out and considered slowly. If you're not used to writing letters, maybe write a first draft so you can look over it and make edits before you write a final copy. Even if you don't ever give your letter to the person but just use it to organize your thoughts, there's something about actually writing out your words by hand that makes you more selective with your words. It empowers you to craft them well instead of spewing impulsively. And if you do choose to give it to the person, letters or cards have the benefit of longevity. I love to keep letters and cards that have spoken to me in a special way so I can go back to them when I'm having hard days. Months or even years later, they continue to be an encouragement to me. It doesn't even have to have a lot of words...It's the thought that counts! 

For my Christian readers, I have one last thing to say on considering the gravity of your words: This applies even when the thoughts that come to your mind are words from the Bible or Christian phrases. Statements like, "You don't have enough faith," or "Are you sure there aren't any sins that you need to repent of?" do more to cause hurt than actually draw me closer to God. Don't hide your faith, but be wise in the way you present it. Sometimes the most hurtful words I have received have been laced with scripture or Christian phrases in a way that was insensitive, pushy, or just plain wrong. I'm not saying that the Bible is not a source of encouragement. I have found much encouragement from God's Word both in my private reading and from reminders from others. I am also not saying that every use of Scripture should make me "feel good." But it should always be used carefully. It should never be used to tear someone down, as a means to show how "good" you are, in a nagging fashion, or like an "incantation" to be tossed in the sick person's direction (as though repeatedly typing a scripture reference or a Christian phrase in the comments of someone's Facebook posts will "fix" them). God's word is precious. May we never use it in ways He did not intend, and instead, learn to handle it carefully in a way that draws people to Him!

5. Be slow to give medical advice. Be slow to give advice. Period.

I have a team of doctors I see regularly. They know the results of my latest lab tests and they keep tabs on all my medications and supplements. Treatment for lupus can be delicate. I can't go on a "treatment trying spree." Every change I make requires close monitoring. It is a lot of work. It is tiring. Sometimes, trying something new - even stuff that is all natural - leads to no (or bad) results, added discouragement, money lost, and a heightened hesitancy to try something else. So don't be offended if I don't show enthusiasm for every wellness idea every person gives me. When someone says to me, "I read on the internet that...," on the inside, I'm screaming, "Do you really think you've done more research on my chronic illness than me and my doctors?" I'm not saying that all medical advice is unwelcome. I'm just saying that you need to be slow to give it.

People with chronic illnesses are inundated with advice. All the time. It doesn't stop. Ever. Sometimes Usually, it's just too much. The sheer volume of advice can be overwhelming. For numerous would-be encouragers, when they see someone going through something tough, their knee-jerk reaction is to give as much advice as possible. They want to help. This may come from a very loving, well-meaning desire, but not necessarily a wise or healthy one. The main desire of the encourager should be to encourage, not to "fix the sick person." Personally, I have been left discouraged by people who have trampled over me in their mission to "fix" me. This is not loving. Think about this: If you're giving me advice, chances are, you are one among the many that day who felt they had great advice or the perfect cure. So if you don't know me very well, and you just start rambling all your helpful tips, it's likely that I've heard them all before. And if you're not careful, your words may feel like extra burdens heaped onto my already burdened shoulders. I know that you are just trying to help. But sometimes what is meant as help is just a shot of discouragement that leaves a harsh sting. 

So when should you give advice to someone with a chronic illness? This is where considering the gravity of your words and being slow to give advice come together. There's no perfect science to this. In general, if the person isn't out right asking you for it, I would be hesitant to give advice until I got to know them a bit and took some time to listen first. (I talk more about this here.) Again, I'm not saying all advice is unwelcome, but be slow to give it. And when you do, consider the gravity of your words.

- - - - - - - -

I am not trying to take the stance of an expert or definitive authority on this subject. I'm still learning. And I hope that what I write will open up dialogue. So if you have any questions or some insights to share, feel free to leave a comment. :)

How To Encourage Someone With A Chronic Illness (part 1)

Some time ago, a friend asked me, "As a person with chronic illness, what is the best way to encourage you?"

I really appreciated this question. It showed genuine care. It showed an attitude that had my best interest in mind. I have experienced frustration and hurt by some well-meaning people who just didn't know what to say or who were insensitive in their crusade to fix me. I don't mean to sound negative. For every ill-chosen word, I have also received dozens of life-giving words. The sad thing is that it is so easy for the good words to slip from the mind and so difficult for the not-so-good words to un-stick. It can be a struggle to not let the not-so-good words leave me jaded.

The more I thought about my friend's question, the more I realized how hard it is to answer. It can't be answered well in one short conversation or one blog post. (Expect more to follow this one.) So for those of you who are wondering how you can encourage someone who lives with a chronic illness, here are a few things to get you started:

1. Listen. 
I mean, really listen. Sometimes, I just need to feel heard. In my work and relationships, I spend a lot of time investing in and listening to others. I need times when someone will listen to me as well. In fact, the people who have spoken the most life-giving words to me are the ones who listen far more than they speak. To be honest, I don't know how you can begin to know the right words to say if you haven't listened first. I would go so far as to suggest that you should not say (or type) anything until you have first taken the time to listen. (This can be hard in the world of social media and texting, but the difficulty makes the need for listening all the more crucial.)

Listening should always be the starting point. Without listening, it would be really hard to do the rest of the things in this list.

2. Show empathy.
...NOT pity. There are some people who, when they ask me how I'm doing, make a sad face and don't believe me when I say that things are going great. This is pity. It is far from encouraging. Pity makes me feel small, sad, and...pitiful. On the other hand, empathy makes me feel valued and cared for. Empathy is what we are doing when we "put ourselves in someone else's shoes." It is an awareness and understanding of someone else's experiences and emotions. (You can look at the dictionary definition here.) There's something about pity that leverages oneself and lowers the other person, while empathy involves humbling oneself and lifting up the other person. It is hard to articulate how pity and empathy differ in practice, but it is really easy to spot when someone is pitying you. So what makes the difference? Dignity. Empathy says that I am worth being understood. Pity takes away dignity and says that I am "less than."

Speaking of being understood...

3. Understand that my identity is much bigger than my illness. 
In other words, don't reduce my entire identity to my illness. Yes, ask me how I'm feeling. But also ask me about my work. Ask me about the books I'm reading. (I always have one in my purse.) Ask me which piano pieces I'm working on. Ask me about my summer plans. If you have no idea what's going on in my life, ask, "So, what's going on in your life?" This may surprise you, but I do want to talk about things aside from lupus! If you sit down and talk to me, you'll see that my life is much bigger than my struggles with illness. I have other things on my mind as well. I also have a lot to offer. I might even be able to offer you encouragement for something you're going through! But you'll never know if all you see when you look at me is a sick girl.

This applies to prayers as well. One of my biggest pet peeves is when someone says, "I'm praying for your complete healing," but they show no concern for anything else going on in my life. When someone does this, it makes me feel like the person thinks I have no value until I am completely healed of lupus. (It's that dignity thing again!) I know that it is probably not their intention to make me feel this way, and I choose to give them the benefit of the doubt even if they haven't done or said anything to prove otherwise. And I think that if you're reading this, you probably don't want to be someone to whom I have to choose to give the benefit of the doubt. You want to be an encourager. So, if you want to pray for me, don't just pray that God heals me and leave it at that. Pray for me to have strength for the day-to-day. (I'm living a full life that requires a lot of energy.) Pray for the parts of my life that have nothing to do with lupus. Pray for me to be great at my work. Pray for my family. Pray for my dreams.


I'm sure that this list feels far from complete, and it is. This list is far too short for people who really want to do something. This is just a foundation, a starting point. I'll elaborate and give more thoughts on how you can encourage someone with a chronic illness in the weeks to come.

And a couple of last notes:

If you were recently diagnosed with lupus (or any chronic illness), I wrote something special for you. (You can read it here.)

And if you have been living with a chronic illness for some time and have become so discouraged that you can't receive encouragement even in the most wonderful forms from the most loving people, I have a challenge for you: Read through this list again and apply some of it to yourself. Choose dignity. Choose to see your life as something bigger than your illness. Choose to see the good amidst the hard. I'm not saying this will be easy, but the best things in life seldom are. 

This is the first of a series. You can read more here, here, here, and here. 

Grey Hair No. 1

I found my first grey hair.

I am 34 years old. I should have anticipated this. But I wasn't ready. Of course, this is NOTHING compared to being diagnosed with lupus. It is not that big of a deal. But there's something about finding your first grey hair that makes you realize that time is ticking and you are not as young as you used to be. Oh well. At least I have hair! I would rather keep my one grey hair (and its buddies that are waiting to make an appearance) than go back to my hair falling out in clumps. 

So, whatever you're going through, take a moment to be thankful for the little things...even if it's something as little as having hair.

(You can read about the time I lost my hair here.)

Changing It Up

Today is Blog Makeover Day! Okay, so maybe that's not really a thing, but I did give my blog a makeover. It was time for a change. So I kept what I love and shed what no longer resonated with me. It's not a dramatic change. More like a tweak. I hope you like it!

Goodbye, grey birds...and hello, crisp, white walls!

Where Is My Faith?

I am a Christian. I believe God heals. I have lupus. I believe God can heal me. I still have lupus.

I still believe in God. I still believe He is good. I still believe He heals.

This is not easy theology.

I believe that one day God will heal me. I still make plans as though I will have lupus tomorrow. And next week.

I am bombarded by well-meaning Christians who say words like, "You just need to believe for your healing," or, "Just have faith," and then they start reciting Bible passages about healing. I know them all by heart. And I believe every single one of them...I still have lupus.

Where is my faith?

It takes faith to believe God is good when the doctor's report is so bad.

It takes faith to get up in the morning and go to work when it's hard to move.

It takes faith to make plans with friends when my last lupus flare is in the forefront of my memory.

It takes faith to accept an invitation to perform and to practice the piano when my hands hurt.

It takes faith to give to someone in need after another medical bill comes in the mail.

It takes faith to pray for someone to receive a miracle when I am waiting for one of my own. I might add that it takes an extraordinary love to celebrate with others when I see God answer my prayers for them while I am--in faith--patiently holding on to God's promises for my own life.

It takes faith to dream God-sized dreams when I barely have the strength to carry a laundry-sized load.

It takes faith to not give up when life is so hard.

It is not a lack of faith to plan as though I will have lupus in the future. It is an act of faith to live with the belief that I have a future.

I have faith that can move mountains. How do I know? I watch God move my mountains everyday.

There is a chapter in the Bible that has been nicknamed "The Faith Chapter" (Hebrews 11). It tells story after story of people across history whose lives give a picture of faith. There are stories of great victories, miracles, and heroic acts. But there are also stories that did not end so well. In the great chapter of faith, some stories end with pain and death. Even in the happiest of endings, no story is without hardship and struggle. My favorite characters in the chapter are actually anonymous. All that is said of them is that they "were made strong out of weakness." That is what my life looks like. That is what the bulk of the miracles I see everyday look like.

"'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong." 
(2 Corinthians 12: 9-10)