Hope Heals—How I became part of a book launch

I just finished reading my copy of “Hope Heals” by Katherine and Jay Wolf, yesterday.  I will be writing a full review sometime soon.  I want to make sure I do the book justice and I may even reread the book before I write my full review! 

In the meantime, I’ll tell you this much—they have an amazing story and I think everyone can learn from their hard earned wisdom.  On April 26^th, you need to buy a copy and a box of Kleenex!!!  (This book is one of the few books I’ve read that I think could even make a grown man cry!)

I’ve had some people who have asked how I came to be a part of this launch team.  I thought, before I share my review, I should share my story of how I got involved!  I also will be sharing a way YOU can help us launch this book at the end of the blog. 

I cannot tell you the exact date that I heard of the Wolf’s story.  I know that it was after I was dealing with my greatest suffering.  I had survived the worst my illness had to throw at me; but I still had so many great challenges to overcome, so many abilities to regain (some abilities that I’m still fighting to regain!).  I was thankful for the fact that I had survived, but unsure how I could continue to fight.  I was weary.  As I was scrolling down facebook, I saw where Joni and Friend’s ministries had shared a short film about a young couple in which the wife had survived a massive and nearly fatal stroke.  (The link is actually here—so I guess I heard their story first in December 2013-- http://www.joniandfriends.org/blog/jay-katherine/ )

As I watched the story, I couldn’t help relate to my own suffering.  Though there were many differences, I could see many similarities to my own story.   I too was young, in the age range when most people have no realm of physical suffering, having to relearn physical tasks most twenty-somethings give no thought to having to lose.  Yet, Katherine had to relearn things—like eating—that I had thankfully never lost.  I found myself thinking “the same God who brought her through her suffering; is the same God who will bring me through mine.  If she can find the strength to rely on Him, so can I.”  On top of that, I was so encouraged by the way Jay loving served her and helped her as her caregiver; the Christ-like love in their marriage was so vivid and beautiful, in many ways more beautiful because of their suffering.  Though I didn’t know them personally, and we were on opposite sides of the country, I somehow drew from their strength and courage. 

Because their story touched my life so much, I signed up for email updates.  I found out that they had begun a ministry to help other stroke survivors, as well as other people who were enduring suffering of all kinds.  “Hope Heals” was the name, and it was based on Hebrews 6:19—“Which hope we have as an anchor of the soul, both sure and steadfast”…they had discovered in their suffering, and the message they wanted to share from their suffering, was that we as Christians have an unshakable hope that isn’t determined by our physical circumstances; and that our Hope heals us Spiritually, even when physically we may have permanent scars and disability from our suffering.

On February 18 of this year, I received an invitation to fill out a form to join their launch team, for the book they were publishing that shared in detail, in alternating voices from Katherine and Jay, everything that they went through personally and as a family during and after Katherine’s stroke, and how they served a God who is bigger than their devastating circumstances.  I was in a hurry that day, and honestly felt like I was probably ill equipped to be a part of this launch team because I’m not the best salesman, but I could not ignore the tugging in my spirit that I needed to fill out and enter that form right that very minute.  Much of the form included the primary information—name, address, etc—but there was one box where you were supposed to include why you wanted to be on the team.  I had so little time, and wasn’t sure how much to include (after all they’d be reading A LOT of these) but I tried to briefly explain what their story meant to me and why.  I didn’t know much about the selection process but I knew I would hear on or around February 22^nd. 

February 22^nd was kind of a busy day for me, and I didn’t give much thought to it until that night as I was getting ready for bed.  When I realized that I hadn’t heard from the launch team, I assumed that must be I wasn’t on it.  However, it came in sometime after midnight that I was on it—and when I read the email I was ecstatic!  I also found out that they had to shut down applications early because the response was overwhelming. This means had I waited until the next day when I was less in a hurry, it would have been too late! 

This experience has already meant so much to me.  I believe in the power of their story, I believe in the Hope of Jesus that brought them through this difficult time.  The launch team packets were so gracious, so personal, and being the avid reader that I am, I get giddy when I see “advanced readers copy” on my copy of the book!  I’ve been an avid reader for as long as I can remember, and yet this is the first time I’ve had a chance to be a part of something like this launch team, to actually get to be among the first to read a book!  On top of that, the launch team members have been able to share their stories of hope within our group, and those stories have been a blessing to me that I didn’t expect when I signed up for this journey.

If you are interested in their story and would like to help them get this book of the ground too, I have a way that you can help!

Pre-order the book now and those sales will all be counted toward the opening week numbers (on April 26th), just like opening weekend box office numbers for movies. The more sales early on, the more likely there will be future printings of the book, preferential placement in book stores, and mainstream exposure on book lists and in media. To say THANK YOU for pre-ordering they have compiled some really fun goodies if you order 2 or more books, but they're only available for a LIMITED-TIME! 

Today the launch team was informed that the Amazon preorders are doing GREAT (praise God!) but their publisher has told them that Barnes and Nobles is lacking in preorders.  The amount of pre-orders at barnesandnoble.com will determine the amount that they stock in store and how prominently they display the books in their stores.  I personally feel like getting this message of HOPE out in a non-Christian bookstore is extremely important.  Can you imagine how many people may be going through situations similar to the Wolf’s that may need to hear this story, who may not travel into a Christian bookstore, but would stop by Barnes & Nobles?  Let’s give them a chance to hear this story about a life changing HOPE and let’s get these preorders up!  Also, at less than $18, it’s one of the better prices for preorders, so that’s so if you want to buy the book anyway, so you win in this deal too!

If you want to purchase from Barnes and Nobles, please head over to

http://www.barnesandnoble.com/w/hope-heals-katherine-wolf/1122239244?ean=9780310344544  and put in your order. 

If you order at least TWO copies— a copy for yourself, and a copy for a friend—you will qualify for free shipping at B&N and for some goodies through Hope Heals.  There are even more incentives if you choose to order 4 or 8 books!

So after preordering the book, head over to www.hopehealsbook.com and enter your purchase information, and you will even get a PDF of the book to read right NOW! 

Thank you so much friends!

A note to my single friends on Valentine's ...

"We don’t have many accounts in Scripture of how various couples met and married, but we do have the stories of Rebekah and Ruth to consider. These were women of godly initiative in the fact that they noticed the needs of others around them and they worked hard to meet them. When the Lord decided to introduce them to their future husbands, these two women were serving, not hunting. We can trust God with our desires, even when we don’t see any activity and we’re not receiving any answers to our prayers. For this reason, I find great comfort in two intimate, poignant accounts of how the Lord blessed single women in the Bible.

We must never forget that God’s silences are not his rejections.

 They are preparation for a greater revelation of him.

What a tender, compassionate, and personal God we serve! We have to keep that truth about his character foremost in our minds as we wait on him. It’s never easy to do. We will be tested and tempted in that wait. We will also grow in trusting God with this hope deferred if we do not succumb to bitterness and unbelief."-`Carolyn McCulley

I used to hate Valentine’s Day.  Not just because I was single, but because I always seemed to have the worst luck on Valentine’s Day.

The first Valentine’s Day I remember getting a gift, was third grade.  That was great…until I realized he’d given several other girls the same gift.  Even in my 3^rd grade head, that did not seem right!  It definitely did not make me feel special and unique to him, but instead like I was just one of many. 

Then there were the many Valentine’s that were just lonely, because my illness made me isolated.  I felt very left out of Valentine’s all the way around.

The saddest Valentine’s day I can remember was when one of my friends moved away on Valentine’s, at a time in my life where I only had a few friends.  I’m sure there were other Valentines that were equally as hard that I can’t remember at this moment.

When I finally had my first relationship, I thought “this is the year I’ll have a GREAT Valentine’s Day”….what happened instead is that we had our first, really terrible fight.  Of the three Valentine’s I had a “Valentine”, two were absolutely miserable.  There are worse things than being single on Valentine’s, and dating someone and knowing you are with the wrong person is one of them.  Trust me.

Valentine’s Day can be really hard on the single, especially those of us who feel called to be married.  It seems like a reminder that we are single.  For me, I doubt my calling and it can quickly unravel to a crisis of faith if I let it.  And yet I remind myself, that I must trust God with this, and hope that in time, I’ll have some answers to the questions. 

I’ve found in recent years, this day doesn’t have to be a hard day. I’ve been blessed the last two years to spend time with family and friends over Valentine’s weekend.  Last year I went to a movie—the first movie I’d been to in at least 4 years—with my mom and two friends I grew up with; this year, I was able to spend some time fellowshipping the Saturday before Valentine’s with some friends God brought to me in more recent years.  It reminds me that all love should be celebrated, not just the romantic kind.  And instead of heart of bitterness and confusion, I have a heart of gratitude and joy.  The latter is much better.

If you are currently single today, I want to share some things the Holy Spirit has encouraged my heart with today—these are things I feel are beneficial to us whether we are single for a lifetime or single for a season.

Trust that God’s plan and timing is perfect—while we may not see the reason for our singledness, God is Sovereign and His Will is perfect.  He has a reason for this season in your life, whether it only last a few more months, a few years, or never changes.  Trust that He is good and that He doesn’t withhold the best from His children.  Allow Him to use you and be glorified in you now.

Serve others today. – There are people all around you hurting, in need of love and grace.  Whether married or not, we are blessed with opportunities and the ability to show others Christ like love today.  If marriage is in the cards for us, learning to sacrificially love and serve others today, will enhance and strengthen our relationships with our spouses tomorrow.

Invest in yourself.—While we need to humbly love and consider others better than ourselves, we still need to “tend to our own garden.”  What in your life do you need healing from?  What areas do you need to grow in?  How can you become more Christ like?  Asking ourselves these questions and seeking the answers does not make us selfish, but instead helps us to be full enough and strong enough to pour our lives into others.  And once again, this will benefit us if marriage is part of God’s plan for our lives.  I think it’s impossible to go into a marriage without at least some baggage—we live in a broken world with broken people and we all have a past where we have been hurt by both our own sin and the sins of others—so we always, in some way, carry that with us.  However, I think with time and work, we can make the “baggage” more of a carry on and less of a multi-piece set.

Remember your value.—I’m preaching to myself here, because I struggle the most with this one.  A friend of mine recently posted that the worst part about being single on Valentine’s day are the lies we tell ourselves.  When we aren’t “chosen” by someone, we can feel that it says something about our worth and value, and I think woman especially struggle with this one.  On those moments we feel overlooked, we have to remind ourselves that we already have been chosen—that God sent his Son to die in our place, and that He chooses us to see His glory displayed.  Not only are we chosen, but we are accepted, valued, cherished, adored, and loved, and that will remain true even if we are single for the rest of our lives.  And once again, if we one day marry, finding our identity and worth in God will take a whole lot of pressure off our spouses to feel like they need to fill that void. 

Most of all, I want you to know you are loved.  By Christ and by me. 

Happy Valentine’s Friends!

Love Suffers Long

Charity suffereth long, and is kind; charity envieth not; charity vaunteth not itself, is not puffed up, doth not behave itself unseemly, seeketh not her own, is not easily provoked, thinketh no evil; rejoiceth not in iniquity, but rejoiceth in the truth; beareth all things, believeth all things, hopeth all things, endureth all things. Charity never faileth: but whether there be prophecies, they shall fail; whether there be tongues, they shall cease; whether there be knowledge, it shall vanish away. And now abideth faith, hope, charity, these three; but the greatest of these is charity. -1 Corinthians 13:4-8, 13 KJV

Love suffers long and is kind; love does not envy; love does not parade itself, is not puffed up; does not behave rudely, does not seek its own, is not provoked, thinks no evil; does not rejoice in iniquity, but rejoices in the truth; bears all things, believes all things, hopes all things, endures all things. Love never fails. But whether there are prophecies, they will fail; whether there are tongues, they will cease; whether there is knowledge, it will vanish away. And now abide faith, hope, love, these three; but the greatest of these is love. -1 Corinthians 13:4-8, 13 NKJV

Love doesn't avoid suffering, love embraces the hurting heart. It doesn't rejoice in the suffering, but it refuses to allow the one hurting to suffer alone. Love beckons "if you ache, I ache." Love continuously puts the other first regardless of what they are facing, eagerly giving and sacrificing with all that's in them. Love knows that in this world there will be pain and it knows it cannot stop that, but does what it can to nurture and heal. Love hopes and perseveres even in the midst of long suffering, becoming more patient and growing deeper with each and every pain. Love doesn't avoid suffering. Love doesn't leave. –a journal entry of mine from November 2014

When I think of beautiful love stories, I don’t think of the typical, ideal, perfect love stories.  The stories where it seems that everything is easy and that love means “you don’t have to try.”

No, no….the most beautiful and Christ like love stories involve suffering. 

When I think of beautiful love stories, I think of people like Joni & Ken.  Joni is a world known speaker, author, and disability advocate who became a quadriplegic through a diving accident at age 17.  Joni is a modern day hero of the faith, championing others with disabilities, and so many disabled people all over the world know the name of “Jesus” because of her ministry.  Then there is Ken, who I’ve heard say on more than one occasion “I’m married to a beautiful woman who just happens to be in a wheelchair.”  He will quote 1 Samuel 16:7 (But the Lord said unto Samuel, Look not on his countenance, or on the height of his stature; because I have refused him: for the Lord seeth not as man seeth; for man looketh on the outward appearance, but the Lord looketh on the heart.) and proudly say, “that’s Joni. She’s in a wheelchair, but that’s not who she is, she is a beautiful heart and soul.”

I think of Jay and Katherine Wolf who had their lives turned upside down when Katherine had a nearly fatal stroke at 26, after only being married for a few years.  Jay will say, it has not been easy, but Katherine is MORE beautiful to him now than she was before the stroke, because of how her suffering has refined her.  Like Joni and Ken, they are also modern day heroes of the faith. 

And I think of two more heroes of the faith, Nick and Kanae Vujicic.  Nick was born without arms or legs, and wondered if his condition would mean that he would never marry.  Yet, one look at them and you can see the adoration of Kanae towards her husband.  It’s in her eyes.  They absolutely glow around one another and it’s beautiful.

The reasons I love these stories, is because each couple I listed has an individual with a life changing disability or condition; and their spouses love them more in their suffering, not less.  They see that person as a precious soul, someone they are blessed to spend their life with, not someone who is a burden or not worth loving due to their suffering. It’s how I pray I’ll be loved one day—and more than that, it’s how I pray I will love one day.  The thought of my future beloved suffering in the now is when I long to be with him the most…for I don’t think true, Christ like love rejects suffering, but instead embraces it.

We live in a world that says ‘suffering and love’ don’t go together.  Divorce rates are much higher in situations where there is a disability, chronic illness, or life changing injury.  Many people dealing with physical suffering are often rejected more because they have some sort of lifelong condition than they are because of the person that they are.  On more than one occasion, I’ve had guys act clearly interested in me…until I shared with them that the illness I have will most likely be lifelong, and then I never hear from them again.  I can’t remember a time when I’ve even gotten an “I’m praying for you” or explanation in these situations….just silence.  It’s something that often has greatly damaged my self esteem, though the older I get the more I realize this has way more to do with their weaknesses than mine. 

While the world says, suffering and love don’t go together, the Bible says the complete opposite.

When we hear 1 Corinthians 13 (the “love chapter”) quoted, we most often hear verse 4 begin with “love is patient.”  However, if you read the original KJV, verse four begins as “charity suffereth long.”  In more contemporary terms, the NKJV says “love suffers long.”  After reading that, I felt in many ways “love is patient” greatly cheapens the verse.  The picture of “love suffers long” is much deeper, and more moving.  It’s much more sacrificial and giving.  Now, this is how we are called to love all, not just our spouses; but today on Valentine’s day I’m going to speak more in terms of romantic love.

So many people get married and think of the good promises in their vows, contrary to what they may say.  They are not standing up there truly meaning the parts about loving that person in the “worse, poor, or sickness.”  They are thinking about the “better, rich, and health” times.  Yet, we are far wiser to think of the hard promises over the easy ones. Why?

….Because Love Suffers Long.  True love doesn’t run from suffering… it holds on tighter in the face of suffering.

I find it incredibly interesting that out of all of the other things love should be, the first part of the description is “love suffers long.”  And true love, true love does.  Not only does it begin with “love suffers long,” the section that describes what love is and what it is not, ends with (in verse 7) “endures all things.”  Therefore, the Bible’s description of Love begins with “Love Suffers Long,” and ends with “Endures All Things.”   Verse eight goes onto say, that it fails not, and verse 13 goes onto say that of faith, hope, and love, the greatest is love.   This shows us that love is not a fleeting feeling, but a commitment of the will to sacrifice and love someone else above yourselfeven when you don’t feel like it, and even when it is difficult. Actually, I think it means we are to love MORE when we don’t feel like it, and when it is difficult!  It is not a coincidence that this section stresses the enduring nature of love.  God knew our human hearts were fickle and that we would need these words to reminds us how to base how we love, because the way we love others should point to Him.

Christ died on the cross for us, and God’s love certainly does suffer long.  He is gracious to forgive us, and not one of us is Holy.  The only Holy human who ever walked this earth, took our sins, our greatest sickness, our spiritual sickness, and put those iniquities on His shoulders, and died for us so we could be saved, and that promise, that love, will infinitely endure. 

As a Christian, I believe that God has called us to mirror Christ (the husband) and the Church (the wife) in our marriages.  One thing God has placed on my heart in recent years, is that my illness doesn’t have to be a negative thing in my possible future marriage; no, instead it can be a great vision of the gospel played out.  If marriage is in God’s plans for me, I know just as Christ went through great pain to take on my Spiritual sickness, my husband will go through much pain in dealing with my physical sickness. While it grieves my heart to think of my husband having to suffer for me, I also realize that suffering is often the very thing that refines us.  While my life has been incredibly difficult due to my disease, it is also the thing that has made me the most Christ like; and I pray that if I marry, it is also important to my husband’s story of becoming more like Christ, and honestly, my biggest hope and prayer (even now) for my husband (whoever he is and where ever he is) is that he grows more in the image of Christ.  Therefore, my illness which most see as a liability is not a liability at all; but it may be a great opportunity to advance the gospel and refine our own hearts. 

I still have days that I struggle in my singleness.  I probably always will struggle some, until I say “I do.” However, I’m thankful for all God is showing me and teaching me in this time.  Perhaps, in God’s graciousness, He’s “delaying” my future marriage so that we can get a better start.  While I will wait, I will prayer for His wisdom and guidance and preparation in this season.  I will pray, that if He has someone in mind for me, that He’s keeping Him in His perfect Will, and preparing his heart for me.  I will learn to “suffer long” knowing that my husband will too have problems, and my experience of suffering will be a gift to him. For when he is suffering, I will know how to encourage and bear it with him; because love suffers long and endures all things and fails not.

Happy Valentine’s Day 

I read a wonderful article on the best thing you can look for in a mate.  I’d like to share it for my single friends, because it really encouraged my heart and I hope it will encourage yours.  There’s a lot of wisdom in it!

http://www.kevinathompson.com/the-most-overlooked-characteristic-of-who-you-want-to-marry/

Another blog that encouraged my heart, from Jay Wolf (who I mentioned earlier).

http://darlingmagazine.org/do-we-need-new-love-songs/

The Gifts of Suffering

'Tis the season of Christmas and we find ourselves surrounded by gifts. Yet, some of the greatest gifts we ever receive are not wrapped with paper and bows, but wrapped with trial and tears. 

Twenty two years ago I received a diagnosis of dermatomyositis, a diagnosis that would ultimately impact the rest of my life. I've experienced a multitude of ups and downs through the years. Sometimes life with pain and fatigue, day in and day out, is extremely difficult; yet I know it has shaped me and in the long run made me a better person. While they are not easy gifts to receive, there are truly gifts of suffering. 

The Gift of Gratitude 

After years of dealing with the ups and downs of illness, I am constantly learning how to give thanks in all circumstances (1 Thessalonians 5:18). On top of that, because I have gone years without certain abilities, when God has graciously allowed me to have them back, I feel a deeper sense of gratitude for every ability I gain back, no matter how small. 

The Gifts of Contentment and Joy

I am certain than one cannot know true contentment or joy until they've experience suffering. Worldly contentment and joy says, I'm happy because of my circumstances; but Biblical contentment and joy come from being happy within the hardest of circumstances. One cannot not be content in all things until they've lived through all things, and are able to say that it truly is Christ that gives them strength (Philippians 4:10-13).

The Gifts of Perseverance and Hope

Learning to be content and patient within your trials, leads to perseverance, and perseverance leads to hope. Even better than that, it leads to a Hope that will not disappoint us. (Romans 5:3-5)

The Gift of Ministry and Compassion

As we allow God to comfort us, we in turn learn how to comfort others (2 Corinthians 1:4). One of the greatest gifts my suffering has given me is that it has softened my heart and allowed me to be compassionate towards others. I have the ability to truly engage with those who suffer, because I have suffered. 

The Gift of Longing for Heaven 

Suffering reminds us that we are not meant for this world. Our pains remind us that we were not created to live in a fallen, sinful world, and gives us reason to hope for the glory of Heaven (2 Corinthians 4:17). 

The Gift of Sufficient Grace

I have found that one of the greatest gifts I've been given in my suffering is the gift of sufficient grace. There are times when I look back and know the only reason I survived extremely difficult days was because of God's daily, sufficient grace, because the fact that I have endure such dark days without completely falling apart is nothing short of a miracle (2 Corinthians 12:9-10).

The Gift of Suffering with Christ

And finally, when we suffer as Christians we have the opportunity to suffer with Christ and eventually be glorified with Him! (Romans 8:17). Our sufferings help to draw us closer to Him, refining us and making us more like Him through our hardships. 

Though these are not the typical gifts we think of at Christmas time, I think they are gifts we should ponder the entire year. So as you gather around your tree this year, think of the "unconventional" gifts God has given you, the lessons He has taught you, and the blessings you have received. 

Merry Christmas!

Jesus is the reason

For the season. 

(And every day of our lives). 

For unto us a child is born,

unto us a son is given: 

and the government shall be upon his shoulder:

and his name shall be called Wonderful, 

Counsellor,

The mighty God,

The everlasting Father,

The Prince of Peace. 

Isaiah 9:6

But You Don't Look Sick!

Yesterday brought Invisible Illness Awareness week to a close for 2015.  Before I go further, I think it’s appropriate to explain exactly what invisible illness is—an invisible illness is any chronic condition that is not visible by the untrained eye, or in other words, the sufferer “does not look sick.”  It is estimated that 1 in 2 people are living with some type of chronic condition, and of those people 96% have an invisible illness.[1]

There are many things that have been said to those of us fighting an invisible illness that have hurt or offended us, but of the many quotes out there, one of the most common and most hurtful is “but you don’t look sick.”  As a final thought for invisible awareness week (even if it’s a day late!) I thought I’d take a minute to explain why such a seemingly harmless phrase tends to hurt so much.

There are multiple reasons why this one statement hurts, and I’m going to attempt to share why I’ve felt personally offended by this statement.  Before I go further, I know there are times when this phrase is offered innocently, with no intention on the other’s party part to hurt or offend.  I’ve come to realize that there are times that statement is made, and it is genuinely meant as a compliment.  It’s someone’s way of saying “hey, we know you are falling apart on the inside—but take heart, you still look good!”  When offered in that context, I try to take it as just that—a compliment.  However, more often than not, it’s a not so cleverly disguised insult.  You can usually tell the person is insinuating they don’t believe you are sick by the tone of their voice, or sneering look they give you.  In those cases, it’s someone’s way of saying “you don’t look sick; therefore I don’t believe you are sick; I think you are a liar or a hypochondriac.”  I’ve even had someone blog about me in this context!  They can’t “see it” so they don’t “believe it.” (And after over 20 years of being sick, I’m still trying to figure out what these people think a sick person should look like.)

The reason this comment cuts so deeply, when used a verbal weapon, is because it completely invalidates all the pain and suffering one is enduring because they are sick.  We are often grieving over abilities and dreams lost, and someone saying “but you don’t look sick” is akin to going up to someone who just lost a loved one and telling them “well, you don’t look like someone who has lost a loved one.  I don’t believe they really died.” If someone actually did that to a grieving person the majority of people would say to them “how awful! To say that only adds to their grief. Why are you so hurtful?”….and yet, that’s exactly what has happened to many of us in the context of chronic illness.  In one short little phrase, everything we go through is met with disbelief, all with five little words.   What’s worse, is it’s hard to “prove” that we are sick, and those who love us should never ask us to prove it anyway.

In recent years, I’ve come to realize one thing that bothers me about this comment is how untrue it is.  Even at my best, there were physical signs of the illness.  My skin was often red due the rash associated with my illness.  My body was swollen due the high steroids I was on as a child.  I’d get noticeably fatigued and tire faster than my peers.  And that was at my BEST.  As my disease worsened, the signs got more and more noticeable.  My hair fell out and thinned greatly.  My entire body lost fat and muscle tissue. Areas of inflammation became calcium deposits.  I could barely walk and walked with great difficulty.  My “invisible” illness became “visible.” 

The thing that shocks me when I think about this time in my life though is how so many people still could not see the signs of the illness.  They were written all over my body and yet, often if they were noticed, they were not noticed in the right context.  An adult, who was supposed to be over here helping me, laughed at the way I walked (and she was definitely old enough to know better!) I was often too weak to get out and when I could, I didn’t have enough energy to wear my make up, and I’d get endless questions about why my skin was red.  My shawl rash (around my neck) has been brought to my attention (even in my better days) throughout my life and I’ve gotten multiple lectures about how I should not be in the sun without sunscreen even though I hadn’t been in the sun at all… my skin just does that! People do notice that I “look sick,” but it doesn’t seem to register with them that what they are seeing is sickness.  Because of that, I often feel insecure about all the things previously mentioned and more.  When you already feel bad physically, you don’t need someone adding to the emotional pain by pointing out all the ways you look different than “normal.”

I’ve lived life on both sides of the coin.  At my best, I didn’t look sick, or at least there were only slight signs.  At my worst, the signs were more obvious and yet still did not reflect how bad I felt nor did the indicate how weak my body had become.  There are days I long for my illness to be more invisible again, simply because I felt better.  Yet, I know if that happens, I’ll be met with skepticism and find people once again not believing me. It’s not that I want attention or pity, I just long for understanding.  This illness is real, not something I dreamed up or imagined. One of the hardest things about my better days was that I truly did have limitations, even at my best; yet it was rare that I would find people who would truly see my limitations and help me when I needed it.  I long to be able to simply ask for help; not feel like I have to demand it or argue with someone over my limitations. Whether it’s obvious to someone else shouldn’t matter—it’s a very real illness with very real complications in my life. 

So folks, be careful when you say “but you don’t look sick” to your chronically ill friends.  If you’ve taken the time to read this, there’s a good chance you care enough to not want to hurt them.  As I said earlier, I know sometimes it’s simply meant as a compliment…but there are other ways to say it that may come across better.  For instance, say something that validates what they go through first.  Something along the lines of “I know you are going through so much and how you look may not indicate how you feel, but you look really good today.”  Or, better yet, just give the person a compliment and leave the being sick part completely out of it, something like “you look really pretty today!”…. after all, do you go up to your healthy friends and say “You look so good today!  You look healthy!” So why not just give your sick friends a compliment without tying it into their health too? 

I hope to keep blogging more.  I have so many ideas, but just very little time to get them down!  Thanks for reading!

[1]http://invisibleillnessweek.com/quick-description/

P.S. I had to add this picture because it made me laugh out loud!