Living with a chronic illness can bring many physical challenges, but there are also other inevitable hidden psychological and emotional side-effects. In this post, we’ll talk about some of those challenges along with some encouragement.
I’ve known I’ve had a chronic illness since I was five years old. Although it was thought at the time that females were only carriers of Fabry disease, my family struggled through the years of treating major complications with my dad’s journey with the same disease.
Blessings in the Mess
Fabry disease (pronounced fah-bray) is genetic—carried on the X chromosome, so many people in one family can have it. The thing is that it’s also rare, which means many families may not even know about it yet.
I think the following excerpt from Fabry Disease News is an excellent short-version explanation of the disease:
Fabry disease is a genetic condition that affects the breakdown of certain fatty substances known as globotriaosylceramide (Gb3 or GL-3) due to a deficiency in the activity of an enzyme called alpha-galactosidase A. This deficiency is caused by a mutation in the GLA gene that provides instructions for this enzyme. As a result, these fatty substances build up within cells causing damage mainly to the heart and the kidneys.
Fabry Disease News
The interesting thing about how Fabry disease was found in my family is that an ophthalmologist somehow knew what he was looking at when he saw the corneal whorling (starburst pattern in the cornea) in my eyes during a routine appointment. That’s right. An eye doctor. Someone you’d least expect to know anything about such a rare disease—especially in 1990 when even fewer people knew about it than now.
That same doctor also found Fabry disease in several other families before he retired. I can’t really thank him enough, but he also gave some of those families our information to connect with. Our family had been dealing with it for years, and these poor souls were just finding out their whole lives were changing.
At the time, there was no cure and no treatment. None. The life expectancy of a classic Fabry male was 38-40 years old.
Thirty-eight to forty. Not that much older than I am now.
All that could be done then was manage each complication as it came up.
Kidneys fail. Dialysis. Transplant.
Heart can’t keep up. Defibrillator/pacemaker.
Spleen. Remove it.
And on.
There was absolutely nothing that could be done for the minor symptoms of the disease. I say minor because those symptoms aren’t usually life-threatening—just quality-of-life altering. Like the inability to sweat. The terrible gastro-intestinal issues similar to IBS. The intolerance to extreme heat and cold that can bring on agonizing pain in the hands and feet. And all the rest.
I’m looking back over what all I just wrote, and I’m struck anew at just how serious this is. But then I’ve lived with this all my life; each time my family talked to another family just learning how much their lives would change, I pitied them. They didn’t have the benefit of knowing since childhood. Children have a special way of processing information that really helps as they grow to slowly grasp the brevity of a situation.
I’ve always been struck by how blessed I’ve been in my Fabry journey. Unlike my dad and uncle—who’ve both passed now—there is hope for my generation. Thanks to the grueling and many times invasive testing and trials and biopsies brave souls like my dad endured, since 2003, the Fabry community has gone from no treatment whatsoever to access to a life-extending treatment called Enzyme Replacement Therapy (ERT) to other options that also focus on treating those quality-of-life symptoms like nephropathy and gastro-intestinal upset.
I received ERT for 14 years starting when I was 18—young enough for major damage to be prevented, and thanks to the time my dad received treatment, he lived almost twenty years past the age he ever dreamed.
Now the life expectancy for males is fifty-eight years old and seventy-five for females. With more treatment options becoming available and more patients receiving treatment early, I’m interested to see how these numbers might improve even more.
There is much to hope for in the Fabry community right now, but the truth is, as with any chronic illness, there are good days and bad ones. And sometimes the worst ones are those affecting psychological and emotional wellness. So I want to talk about some of the inevitable struggles those dealing with chronic illness will face.
Side-Effects of Living With Chronic Illness
#1 – Self-Doubt
I’ve been struggling with this one especially lately. It’s scary to wonder if you can trust your own mind, but the truth is no one can really trust their mind.
We all misremember. Ask anyone in law enforcement—eye-witness testimony is the least reliable evidence in any case.
We just have an extra reminder that we can’t trust our minds. All we can do is cling to the truth of Christ.
#2 – Judgment
There are some chronic illnesses referred to as invisible: These diseases may not show as much on the outside. These are the ones someone might look at you and say “You look fine. What’s your problem?”
But we chronic illness sufferers know that things are not always as they seem. This iceberg stretches miles further below the surface than anyone can see—save God.
The same is true for others.
#3 – Weakness
I want to do stuff. It’s so frustrating when your body won’t cooperate with all the things you want and need to do.
And it can be overwhelming when the workload seems mountain high when you have foothill kind of energy and strength at the moment. Or you feel great and convince yourself that you just need to try harder until you fire in and are reminded of your frailty at an inopportune time.
But you know… we just have a bigger weakness for Christ to work through. And I have it on good authority that God loves using the weak.
#4 – Anxiety
There is a lot to worry about with a chronic illness. Everything from lifespan to care to being a burden to loved ones.
But sometimes when things are bigger than I can really comprehend, maybe it’s a little easier to release the worry. There are so many things beyond my control that I don’t even try to touch it.
The truth is all our lives are in the hands of the Father. Even chronic illness can’t change the plans He has for us.
#5 – Discouragement
It’s inevitable that all the doctor’s appointments, symptoms, and inability to keep up will lead to discouragement. No matter how optimistic we naturally are, all the things will catch up with us.
That’s okay. It’s normal.
But it’s also inevitable that we come out of that. That we can see the extreme ways God blesses us through our weaknesses.
I sure wouldn’t argue with you if you said having a chronic illness sucks. It really does. So many side-effects come with it, but maybe—just maybe—chronic illness gives us a unique way to see the many beautiful blessings in life.
Do you struggle with a chronic illness? What encourages you through the hard parts?
For more reading on my Fabry story, check these out:
- Chronic Illness: My Story from HISsparrowBlog
- Fabry Disease: The Story Continues from HISsparrowBlog
- Chronic Illness: 5 Truths I’ve Learned From Fabry Disease from HISsparrowBlog
And here are some other resources related to chronic illness and Fabry.
- If You’re Living With A Chronic Illness, These 100 Quotes Will Resonate—And Help You Feel A Little Stronger from Parade
- Fabry Support & Information (FSIG)
- Fabry Disease News
- NORD – National Organization for Rare Disorders
- National Fabry Disease Foundation
- ReThink Fabry (Resources and Support)
- Mindfully Rare (Mental Health Support)
I frequently link up with the following: Grace & Truth with Embracing the Unexpected, Tell His Story with Jeanne Takenaka, and Let’s Have Coffee with Joanne Viola.
Thank you for this reminder that we do not walk alone. And you’ve put to words what I have recently been struggling with in these five points. Thank you.
So glad you were encouraged, Sarah!
You are perhaps the strongest person I know. I have watched you meet and surmount every challenge in your path. My heart hurts for you in the struggles. I would give you all the strength within me if God would only let me! I love you so much more than I have words to say ♥️
My heart also goes out to everyone who loves someone with chronic illness.
You have been such a wonderful support through everything!
Eye opening post. I struggle with chronic back pain and Lyme disease, so your gracious encouragement is so appreciated.
So glad you were encouraged, Michele! Several bloggers have commented on this post who I had no idea they struggled with a chronic illness. Each of us has something, don’t we? Thanks so much for stopping by!
Thank you for this encouraging and hope-filled post that is sure to be a help to many. May God continue to give you strength each day as you need. Blessings!
Blessings to you, Joanne!
Thank you, Ashley for sharing so transparently, but also so hopefully. It is clear God is the divine author of your story, and He works a beautiful tapestry through you. Thank you for allowing others to see HIs power through you.
That’s so sweet, Donna! Thank you for the encouragement today!
You’re amazing, Ashley. What more can I say? Thanks for the way you’ve so graciously articulated the hard parts and the blessings through difficult circumstances.
Aw! How sweet of you to say, Lisa! I’m just thankful that my story can be used to help others.
Wow, your words are an inspiration to me. I live with multiple disabilities and find that weakness is a major struggle for me too. I, however, love your comment about the greater weakness we will overcome by being in Christ.
Yes, we are blessed that we’re not tempted to live in our strengths instead of God’s. Thanks for stopping in!
Wow, Ashley! It felt like you were talking directly to me. I can deeply relate to the 5 side effects you mentioned. My chronic illnesses are invisible. I have a list of them, but most predominately fibromyalgia and chronic pain. Thank you so much for your beautifully spoken and touching words. I needed to read this today. Blessings.
I am so grateful my story can help others! Blessings to you!
Even though our problems are so different, you nailed it. I deal with all but anxiety. God has been so good to keep me from that. Self-doubt is probably the hardest for me. Sometimes, I feel almost “normal.” In those times, I wonder if I’ve been imagining the others–til the next time it hits. Then I know this is for real.
Yes! That’s a great point, Carole! Along with an invisible illness comes the ups and downs of doubting yourself. I’ll tell myself that I’m just lazy, because I could do more a little while ago. Then I push and remember that no, I’m not lazy. When I feel good, I do more. When I don’t, it’s okay to pace myself.
I’ve had RA for 25 years now and it has taken a toll on my body. Some might not see it just by looking at me, but I feel it. Chronic pain and 3 recent surgeries to help with the damage my RA has done are just some of what I face but that most don’t understand. So I think “judgment” and “discouragement” are at the top of my list! Especially now as I am four weeks out from a spinal fusion that was needed because my right knee flared constantly for a lot of years. Caused my spine and gait to be affected, damaged. I want to do all the things I love, like walking, hiking, traveling, etc. But I can only do them in small doses. Thanks for your candor. I’ve heard of the disease but didn’t know much about it! I’ll pray for you!
Wow, Beth! I had no idea you struggled with all that. I guess that’s part of it, though. Someone else always more going on than we realize. I’ll add you to my prayer list. And by the way, it’s amazing that you’ve heard of Fabry; it’s like my maiden name…no one could pronounce it unless they knew someone else by the same name (which wasn’t often). Thanks so much for sharing today.
Hi Ashley.
I’m sorry you’ve had to struggle with Fabry since you were little. While I know God has crafted a warrior, my heart hurts for you. I was diagnosed with fibro a couple of years ago and seem to have an underlying autoimmune disease (although its keeping quiet right now). I can relate to a lot of what you’ve written and appreciate your wisdom.
May your day be blessed!
Peace and grace,
Tammy
Bless your heart, Tammy! Fibro is a booger. Thanks for stopping in!
Yes, I was diagnosed with Fibromyalgia about 13 yrs ago, and have had chronic migraines for the past 4+ yrs which has left me completely disabled. I often feel like I’m on a see-saw, I’m nit doing enough- I’m doing too much. This is the judgment and disappointment speaking. Really get post that spoke to my heart, I love all the quotes. Grace and Peace Debra Jean
Wow, this was an amazing read. I’ve never heard of Fabry before. So wonderful to see how the Lord intervened to bring you the right eye dr when you were little, and to walk with you in every step of your journey.