About 40% of Americans suffer from incurable chronic illness. In October of last year, I joined that unlucky club. Chronic illness is something we’ve all heard about and judging from the above statistic, I bet someone you know and love falls into that category as well. Perhaps it’s you. I never fully recognized the weight of living with chronic illness until it fell on my shoulders. I’ll get into the details of my specific diagnoses (yep, more than one) in another post. Today I just want to talk about living with any sort of incurable illness and what that can do to your mind and soul.
When I was diagnosed, I was told there was no cure. The doctor offered me a heavy duty prescription, a diet list and very little compassion to go along with it. Here’s one thing I’ve learned while on this journey, specialists suck. I realize that doesn’t apply to every specialist out there but…..If you’re a specialist and you are reading this…..take it as a gentle reminder that your patients are human and need a little tenderness. Ok tangent over…..back to the appointment. I asked my doctor if there were any other options for me. She laughed. LAUGHED. She told me I had no other options and walked out of the room. It was here that the tailspin into depression started.
After my infertility diagnoses (you can read about that here) I learned that finding community of people struggling with the same thing is very helpful. So, I jumped on Facebook and started looking for groups of people with the same diagnoses. I wasn’t able to find anything local, what I have is not super common. I was, however able to find a group with over 1,000 people on Facebook. I was SO relived. I was sure this was just what I needed. Unfortunately I hopped into that group way too soon. I saw post after post of women in the hospital, or seeking advice on getting on disability. So instead of feeling uplifted, this reinforced in my mind that my life was in fact over and I was going to be sick and miserable forever.
This is when I just had to sit with it. With the diagnoses, with the pain, with the fact that life as I knew it would never be the same. A place that almost half of Americans find themselves in their lifetime. At this point you start going through the stages of grief for the life that you used to live:
Shock and Denial
Shock happened in that doctors appointment. The denial happened when I thought my Facebook group would fix everything. This stage didn’t last super long for me. I quickly moved on to stage two:
Pain and guilt
The pain was both physical and mental. The more emotional I got, the worse both got. Guilt. That was a big one. I spent a lot of time in bed. I have two young daughters and I was incapable of caring for them like I normally do. Thankfully my husband stepped in and took over both the mom and dad roll and he did it well, but I couldn’t help but feel guilty for it all.
Anger and Bargaining
Anger that this is your new normal and bargaining with God to just make it go away!
Depression
You’ve bargained and God didn’t take the bait so now you feel helpless. This stage was by far the hardest to get out of for me and the one I get pulled back into most easily.
Acceptance
I’ve told more than one person “Well, this is probably about as good as it’s going to get.” People’s reactions to that were sadness, but for me this was a big deal. This is what that upward turn started with. Is it a little sad and depressing? Well yes, I suppose so, but accepting your new normal and living life is what someone with chronic illness does every day.
So what now? Am I happily skipping through life and 100% in a good place every day? Absolutely not. But, I have to say I’ve come a very long way since the beginning of this journey and I hope to share some things with you that might help you on yours.
God’s got this
This is key for me. There’s nothing like a chronic illness to remind me that this is my temporary home. Nothing has made me lean on God more than this experience. In the middle of a global pandemic suddenly all vices were stripped away from me. I couldn’t have alcohol, pretty much any food that actually tasted good, no going out and doing something fun to get my mind off things, everything was off the table. So where can I turn? To the only one that can really provide any sort of relief. God. Have you worshiped in the midst of distress? This is something I can’t recommend enough. It doesn’t have to happen in a church pew. Close the door, turn the music up and cry out to your creator words of praise.
I know what you’re thinking. “I am in misery. The last thing I want to do is worship”. Here’s what worship does for your mind, body, and soul: it refreshes you. And what is someone suffering from daily pain and discomfort need? REFRESHMENT. You need a reminder that you are a son or daughter of a King. You are fearfully and wonderfully made. You are so much more than an illness and your Father loves you more than there are stars in the sky. It may feel like your life is over but friend let me tell you, this illness, this depression, this feeling of misery is not the end all be all. Is it going to make life more difficult? Absolutely. Will you have bad days? Yes. BUT. This is where you have a choice. Will you let this illness overtake you? Or will you take it as a new challenge. A new opportunity to draw close to your creator and be refreshed?
Here is what I challenge you to do now. Get by yourself and give God 30 minutes. Click on these links, turn the volume ALL the way up.
Another in the Fire by Hillsong United
Graves Into Gardens by Elevation Worship
Faithful Now by Vertical Worship
Promises by Maverick City Music
Jireh by Elevation Worship
Pray
When you’re stuck in the cycle of misery that chronic illness brings, talk to God. Having a great day? Talk to God. It’s an every day relationship. Remember my tiny rant at the beginning about specialists and their lack of compassion? Bring yourself to the One who holds ultimate compassion and love. The One who knows more about this illness than any specialist out there. And do it every day.
Read your Bible
I know this seems like such a Sunday school answer but everyone says it because works. Prayer gives you time to talk to God, reading your Bible is His opportunity to answer. Here are just a few of my favorite verses that help when my illness gets to be too much:
“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” Isaiah 41:10
“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians 4:16-18
“He heals the brokenhearted and binds up their wounds.” Psalm 147:3
“A joyful heart is good medicine, but a crushed spirit dries up the bones.” Proverbs 17:22
“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” Romans 8:18
“But he said to me, “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.” 2 Corinthians 12:9
Bless and be blessed
You friend are walking through this illness for a purpose. My final verse speaks to that:
“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.” 2 Corinthians 1:3-5
Once you reach a point where you’ve made it through the stages of grief and begun to cling to the Lord to make it through this messy life that now includes yet another hurdle it’s time to help others along the same journey. So this is where I am now. If you are reading this, please reach out to me whether it’s on social media or email at [email protected]. Notice all of my advice centers around God. There is no other true healer out there. No prescription, herb, routine, or diet change will bring you what God can. We may not be healed this side of heaven but we can absolutely be fulfilled by the one who gave us life. God sent his own son to die on a cross for us. God on earth experienced pain and suffering. There is no one else that will understand like Him. So cling to the Father and teach others to do the same. Doing life with chronic illness is HARD. We don’t have to do it alone.
