If I tried explaining these symptoms to myself before all this started, the former me would have been confused and most likely skeptical. That’s the most difficult part of living with a chronic illness. Unless you’ve walked the road, it’s nearly impossible to understand.
For 29 years, I was mostly healthy. I had aches and pains, pulled muscles and the like. I had to push through low-energy days. Occasional colds? Of course. But I more or less continued with life.
Something changed, however, at the beginning of 2014.
I don’t know what. Neither do the dozen or so doctors and specialists I’ve seen. Everyone agrees something’s wrong. But no one can find a name for it.
Here’s what I know. The past three-and-a-half years have easily been the most difficult of my life. There’s not a close second, that includes a bout with cancer at 25. I have no way of knowing who I will be from one day to the next. I’ve tried everything short of living in a bubble. Some days, extreme fatigue gets me, the kind that makes holding your eyes open a near impossibility. Other days, nausea gets me. Still other days, body aches, the kind you might have after running a marathon, except I stopped running when all this started.
Then you have the psychological pain of battling symptoms that come and go without rhyme or reason.
And most cruel of all? Every now and then, this unicorn disease takes a day off. I catch glimpses of who I was before this started. It might even take a few days off. Just long enough for a seed of hope to take root.
Maybe, possibly the nameless unicorn croaked over? About that time, Boom! He’s back like he left something.
No assembly of words can describe how completely this chronic illness has affected my life. My body’s tired. It longs for relief. I hear its cries. I cry with it sometimes. I used to force my body to keep moving, angrily ignoring its groans.
Then I realized my body didn’t ask for this. We live in a broken world. Everyone’s body breaks down at some point. I’m 31. Supposedly I’m in the prime of my life. But I’m not entitled to health. No one is. Sometimes the body suffers the effects of brokenness much earlier than it should.
I’ve never openly talked about my struggles the past few years. I don’t know why. Maybe I was embarrassed. No, I was definitely embarrassed. Having played sports from birth, I was bred to push through the pain. Only losers give up when things get tough. I won more times than lost under this logic. Until 2014, that is. Since chronic illness showed itself, I’ve lost many more times than won.
Another factor influencing my silence? The red, white and blue banner. In America, progress is the name of the game. It’s the only game in town, really. We reward the most skilled players. The most productive, efficient, accomplished people have the greatest value. I know this because I played the game well most of my life. Then, chronic illness happened. As my health declined, so did my ability to play the game. No longer did I have the mental or physical capacity to climb the ladder. And as I fell, so did my value and my identity.
Most people don’t understand that America’s game relies heavily on variables beyond their control. Talent, hard work, charisma, connections have must less to do with winning the game than say, health.
So, why bring up my struggle now? I’ve feared being misunderstood or labeled weak or lazy or whatever. But I’ve come to realize that with risk also comes reward, in equal, and opposite proportion. So, I realize some of you won’t get it. Some might even say I’m lazy. But I also some people need these words.
That’s why I bring this up, to give people hope. Maybe my struggle will help someone in a similar struggle. It could be physical or mental or whatever. I want to encourage those who feel alone and isolated. No one understands what you’re going through. Well, I do. I get it. “Where are you?” is often all you can muster up in prayer. You’ve thought about giving up. The stars have aligned against you. And they shine brightly in the ever-present darkness.
I see the stars too. Can I keep it real? Many days suck quite royally. But if I’m keeping it real, I must also say I’ve learned much about God and faith and world. Your pain is not in vain. That’s what I want you to know.
It’s not easy, but you can find joy and peace and hope in the storm. Here a few important I’ve learned.
Keep showing up.
You don’t have much to bring to the table right now. And that’s okay. Sometimes just showing up requires extraordinary faith. You could find a score of reasons to give up, but you mustn’t. In the wilderness, showing up is an act of worship, a step of obedience towards God and a firm no in the face of the enemy’s lies.
Resist nostalgia and shortcuts.
In the wilderness, your faith is being tested, primarily in two ways. First, nostalgia, or living in the past. On numerous occasions, I was tempted to spend my days remembering who I was before all this began. This is toxic, mostly because God doesn’t live in the past, and you will therefore not find life there. Momentary satisfaction, maybe. But no long-term peace or joy or hope. Usually just bitterness and depression and resentment.
Remember the Israelites? What happened when they started complaining, asking Moses to take them back to Egypt? Right, bad stuff. You must fight against this temptation to live in the past. The past can never be recreated or returned to. And you shouldn’t want this, not if you trust God, not if you believe he is good and in control and leading you towards greater degrees of freedom.
The second temptation? To manufacture your way out. To devise your own way of removing the pain or resolving the situation. I must remind you that temptation itself is not a sin. Everyone is faced with this desire in times of great difficulty.
Even Jesus, before he was crucified, prayed that God would remove the cup of crucifixion from him. He begged God to find another way. Here’s what Jesus didn’t do. He didn’t remove the cup himself. He wanted the pain removed, but if the cross was the only way, then the cross he would endure.
In today’s world, there are a million ways to manufacture your way out of pain. Alcohol, drugs, illegal meds, sex, pornography. These never lead to life. Instead, we must seek God
Be honest with God.
I’m always taken back by the honesty of folks in Scripture. As Jesus endured the cross, he said, “God, why have you left me?” The Psalms are filled with brutally honest verses about God’s absence. Then you have Job.
The point here? God isn’t some angry old man waiting to bash you with his holy cane when you express honest emotions.
In fact, I think the opposite is true. God wants you to be honest. I’ll keep it real. Some days really suck. Like really. At times I’m angry with God about my symptoms. And that’s okay, I believe. That’s part of what it means to be human. Difficult times are opportunities to be more human, more whole. Must you be careful not to allow your anger to become sin? Of course. But suppressing emotions because they’re negative doesn’t make you a better Christian. It makes you less human, less holy and less receptive to growth.
Don’t lose hope.
Hope might be the most important tool in the Christian arsenal. Hope is not circumstantial. It is a firm conviction, a way of seeing the world. Hope is what sustains us through difficult times. We believe God is in control, regardless of what our circumstances might lead us to believe. We trust suffering is temporary and that God will use even the worst of situations for good. Evil might have the first word (cancer, chronic illness, divorce), but we proclaim boldly that God will have the last.
Many times in the last three-and-a-half years, I’ve found encouragement in 2 Corinthians 12. In verses 8 and 9, Paul talks about his thorn in the flesh that tormented his flesh. He prayed multiple times for God to remove it. Here was God’s response:
“My grace is all you need. My power works best in weakness.”
I may regain my strength and energy. I may not. Either way, God’s grace is sufficient. It’s enough for me. It’s enough for you too.
Grace and peace, friends.
Kevin Sanders
Hang in there, my brother.
Frank Powell
Thanks Kevin!
Danielle
Wow. Amazing testimony and insight. Thanks for sharing. My husband and I have both walked a health-upset journey now in our short ten years of marriage. It affects your entire life and brings you to new heights with theLord when you allow Him into it. I do pray you get answers that being you full healing though. Strangely reminds me of my hubby’s Lyme Disease that went undiagnosed and misdiagnosed for YEARS. He was bit by a tick his sophomore year in a scouting trip…didn’t get properly diagnosed until the first year we were married in 2007, and it was by a naturopath doctor who has highly sensitive tests for Lyme. Tough journey for sure but God keeps providing. God bless you in this!!
Frank Powell
Chronic illness does impact every area of life. Thankful your husband found healing. Whether I find healing or not, I trust God’s grace is sufficient. Blessings, Danielle.
Amy O'Neal
Frank, I grew up with your mother and actually remember when you were born. I admire you as a young man of 31 putting your fears, disappointment and confession of your anger. However I am not surprised at your love of God and your faith and even your ability to encourage others through you illness and pain. Your grandparents and your mom certainly lead by example. You will be in my prayers. Amy
Frank Powell
Amy, much of what I know about God and faith I attribute to my mom and grandparents. They’re special. Thanks for the encouraging words!
Jane Hulett
Thank you so much for your words of encouragement, Frank, and for sharing your story. Praying for more good days than bad for all. Love to your family.
Frank Powell
Thanks Jane!
Andrea Thomas
So good to read this. I’m sorry you are going through this. I get it, I walk it too.
It’s fun to see your blogs on Bayside, which happens to be my church. You are so skilled Frank. Keep up the great work. And thanks for recommending all those reads a while back for my millennial book club.
Frank Powell
Andrea, thank you for the kind words. And for the books. If you have any recommendations for me, I’m always looking for new books!
Renay Camp
Hi Frank,
Funny thing happened yesterday-I found your GHS letter jacket (or,at least I think it’s yours! It has “Powell” in it. At first I thought it might be Megan’s, but, it has a football on it. I am Reagan’s mom. I come across your blog sometimes! I am writing to you because I have something in common with your blog-I suffer from fibromyalgia. I can’t tell you how many times I have cried out to God to please help me but I get no answer and the pain keeps coming. It sounds so familiar. It first showed up in my mid 20s and went away for awhile. I had another baby at 45 and it reared its ugly head again (with a vengeance). My little girl is 5 and honestly I would not keep trudging forward if not for her. She keeps me going because I am all she has (not literally). Anyway, I felt that I had to let you know, your words spoke to my heart! If you send me an address, I will ship this jacket to you. If it’s yours-awesome, if not, oh well. Thank you again for helping someone like me!
Frank Powell
Renay, not sure how my jacket found a home at your place. I’ve been at the Mayo Clinic the past 2 weeks, part of which I spent in a chronic pain management class. I listened to stories of people suffering from fibromyalgia. They’re heart-wrenching. My battle is with chronic fatigue, though many symptoms overlap. Regardless, thanks for sharing your story. I won’t let this define my story. I pray you will keep fighting as well!
Trish Hogan Cox
Frank, did you buy a new mattress 3 or 4 years ago? Or even a new fabric sofa and love seat. Google toxic bed. Google effects of flame retardent chemicals on health. Federal law dictates all manufacturers must treat there mattresses with enough flame retardant chemicals to allow a blow torch flame to burn for 70 seconds on a mattress before it ignites.
I have lived this nightmare for 3 years. Doctors do not diagnosis it. These mattresses off gas for years creating every symptom you have described and worse. I am now chemically sensitive. My husband has been affected as well. I just wanted to put that out there for you. Just in case.
Praying for your answer.
Jeff Ellis
Frank , THANK YOU for sharing your Heart with us I know it took GREAT courage & strength
to do this !! I am very proud of you !!
Keep up the good work .
SHALOM SHALOM !!
jeff ellis
Frank Powell
Thanks Jeff. Shalom, my friend!
Debra
Frank you should be checked out for Lyme disease. I have had Lyme for 14 years and your symptoms are very similar to mine even though everyone who has Lyme has differing symptoms to some degree depending on the co-infections etc. My suggestion is do some research first then be tested (if you haven’t already) because it is important to understand that the current available tests are flawed and give false negatives a large percent of the time. If you have already been tested and you were told it was negative, again, do your research then find yourself a Lyme aware doctor to see. God bless
Michele Sweet
Hi Frank! Thank you for sharing your struggles and dare I say rewards?! I have lived with a chronic illness, which has become illnesses since I was 17, I am 51 now! For most of my illness I was able to live a fairly normal life, with an occasional flare up, until 2 years ago when my body couldn’t take it any longer! I suddenly found myself unemployed, filing for disability and in the middle of this having heart surgery, which was a complete surprise to me! I have done a lot of reflection, reading and praying and what I have come to realize; GOD is in control, not me! While I professed to belief this most of my life, I never really got it until I could do nothing but depend on him! No big surprise, he has provided in big and small ways! No it hasn’t been easy, yes I cry, a lot, I am depressed, a lot and in pain most of the time, but I have realized all those years I spent “climbing the corporate ladder”, did me no good when my body gave out, not only was I denied short term disability from a company I dedicated my life to for 15 years, (still not sure why, but I have an inkling it’s part of a bigger plan!) I was let go when I couldn’t return to work! A company whose motto was taking care of patients, had not taken care of me! My family, which has always been important, suddenly gained a whole new appreciation from me! Priding myself on being able to “take care” of everything and suddenly having to ask for help….very humbling! I have always loved my husband of 23 years but I have gained a whole new respect and noticed he is more confident in his abilities as he has had to become sole bread winner! I am grateful for Gods promises and love and am encouraged that he is not done with me!, I am still useful to him. Sorry for the length of this post hopefully it can encourage you and anyone else who reads it! Take care.
Michele
Joye Hedleston
Frank, consider what the late great Sy Paine once said, “There is a solution to every problem; that the solution is always spiritual; and probably has nothing to do with the problem.” Addiction to porn is still an addiction. Addictive personalities know when you kick one bad addiction another tries to raise it’s ugly head. Fighting this takes its toil on our bodies! I developed chronic fatigue. I hope this helps in someway. I also have PTSD from childhood sexual abuse. I abused alcohol to cope. Left the church and God brought me back via several ways. One was AA.
Frank Powell
Joye, thanks for sharing your story. I do like the quote. Good stuff!
Jami
I was diagnosed with chronic fatigue syndrome. It turned out to be Lyme disease. It could also be mold. Get to a functional medicine doctor, stop wasting your time on conventional medicine. They can’t help you. I’m a holistic helath practitioner now. I assure you, if you want to get well, you can. God bless you.
Renee
Thank you for sharing your testimony and Godly wisdom! God bless you as you walk THROUGH this trying time with Him.
Heather
This article hit home for my family. I have a daughter that was diagnosed with Lyme Disease and had all the symptoms you mentioned. She too was an athlete that struggles with the “how I used to be.” As a mother, it is so very difficult watching her go through this wilderness. Thank you for being real!
Eva Blackwell
Hi Frank! Your story is my story almost exactly! I have CFS, Fibromyalgia, and had cancer. I know the battle well! Doctors don’t know what to do with us! Although I did find some symptom relief in self injected B12 shots with Folate! But what is curing my illness is iodine. Check out these books;
“Iodine” Why you need it, Why you can’t live without it. By David Browstein MD
“The Iodine Crisis”, What you don’t know about Iodine can wreck your life. By Lynne Farrow.
God bless you as you move forward!
John Notehelfer
Just read an extensive review of the classic by St John of the Cross, “The Dark Night of the Soul” in “25 Books every Christian should read” — it is so insightful when living into a challenging “new normal”
Frank Powell
John, I was actually turned onto that book recently. I’m sure it’s powerful. Thanks!
Gary Newman
I too suffer from chronic illness. Mine is dizziness and fatigue. I have had it now for ten years. They found a black spot on brain stem, after many MRI’s they still do not know what it is but it does not get any larger. They are not sure if they is cause of the problem or not. Some doctors act like they think I am making it up.
It comes and goes. After I lost some weight it cleared up for about three months. And then after the Thrive Conference it was back. It is depressing. I tend to get snappy which is hard on the wife. And I feel so alone, like I am the one who has ever had this.
So thank you for sharing. It helps to have others who understand. Who don’t think I crazy or just making it up.
Putting my hope in Christ. Nothing else maters.