“Perhaps the butterfly is proof that you can go through a great deal of darkness yet become something beautiful.”
For starters, I just want to say if you happen to find yourself on this page– I am sorry, seeing that it is some kind of pain that probably brought you here. I know what it feels like to have pain on the inside, but look fine on the outside. I also want to say that though I live with chronic pain and don’t know what days my pain will feel like coming about, or even where, my faith is not ceasing. I am learning more and more that pain doesn’t have to steal my joy. I know that everyone’s disease is different ranging from mild to severe to even fatal or in between those, and this is why not one single person should feel alone in this. I look forward to swapping stories with you, dear friend! Feel free to connect via the prayer page too. You are not alone. My biggest supporter is my mother. She’s been there for me in my darkest hour.
Ways I’ve coped living with chronic illness and pain
- Reduce stress in your life (it helps when I’m outdoors somehow in nature).
- Exercising to boost relief with natural endorphins (I jog).
- Try in some way to keep being a part of doing what you LOVE.
- Find your support system.
Lupus SLE sprung up on me in September of 2013, at age 23. It was only a month later after I had moved off to Colorado for school and work that the pain had started. I was working with special needs children and started my masters program on campus in Colorado Springs in August. One night my shoulder started burning and when I woke up I was limping and barely able to brush my hair or move my fingers.
I was misdiagnosed at first with RA. My RF (rheumatoid factor) was 640 and to be “normal” it will usually be below 10. I have the symptoms of arthritis (I swell in 2 or more joints), and I test positive in most all my blood work for lupus. The pain just started spreading slowly to different areas until I was properly diagnosed in April of 2014 with systemic lupus erythematosus.
I switched to online schooling to finish my masters degree, sold all that I had, packed up my car and moved back to Texas in July of 2014 for better support and treatment. Though mine is said by my doctor to not be life threatening, my immune system is prone to attacking my healthy joint tissues systemically (throughout my body) and pain comes whenever it feels like it. Flares come and go, as do my exhausted days. Describing the pain is difficult but when a flare happens or I’m in pain, it feels like bruises anywhere inside my body, and someone is either jabbing needles in them or pressing them for long periods of time. Sometimes it feels like tiny screws trying to make way in my joint or bone areas. I don’t deal with external symptoms of lupus and it’s mostly internal. I take medications and go for jogs. I live a normal, active life despite pain.
Below was a post written in the beginning of my diagnosis in 2014.
Some mornings I just want to stay in bed. I know I have to get up, get ready, go in my car and drive, but just turning my steering wheel to back out is a pain. Sometimes I’ll go to sleep earlier than usual just because I know I’ll shift for a few hours and I need to get up early for work. One day, I’ll feel like super-woman at work with the kids, but the very next I can barely walk or push them on a swing. It’s all the things I never had to think twice about doing. The pain can last all day be it in my hands, wrists, feet, shoulders, elbows, knees, fingers or my back. I get bouts of sharp pain in random places. All of a sudden just pouring a cup of coffee is aggravating. I’ve now noticed my blood disorder showing up on my wrists where I feel pain. I basically bleed internally into the skin from within my body; my doctor said it could be the pressure. I’ll also admit to feeling embarrassed. I’m so young, but I don’t feel it. Sure I get frustrated at myself and maybe even annoyed, but I’m not going to feel bad for those feelings either. It’s in these moments I realize, I am not a super-woman.
Most times I pray, but sometimes I cry and sometimes it’s a mixture of both. There is a lot of pain, but there is also much hope. At first I asked God why do I have this pain? Which slowly turned into Lord, what do you want me to do with this pain? How do I glorify you in this?
I felt warm when I felt His sweet answer. Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you (1 Thessalonians 5:16-18). He never said give thanks in only the good circumstances, He said, in all circumstances. In knowing this, that is enough for me. Though my physical pain hasn’t changed, I awoke the next morning after I found out my news, with a different heart in it all. I’m grateful that I’m not worse, that it’s not killing me and that I can still function and move. It doesn’t mean I’m thankful for disease, but it makes me grateful for the things it hasn’t done to me. Sometimes our hardships that we sometimes question God in are pivotal moments only to draw us closer to God; to realize our continual dependency on Him. I have learned it’s possible to feel the pain of disease, yet still have your heart feel joy. How is this possible? This is where I can point to Jesus Christ. This is where I can glorify God. He is the joy in my heart keeping it safe from satans long-term diseases like depression, anger and bitterness (which I’ve totally experienced at some point with this disease).
This disease is just another thing in my life drawing me closer to God. I’m in pain, but my heart doesn’t have to feel it. Together, pain and prayer have opened up a channel of communication between God and me and it will never close. Open up that tunnel with God. You won’t regret it. Don’t let satan take your heart.
I want to encourage you that whatever pain you are going through, whether it be emotional or physical, or both, to pray. Pray right now. Sure, this is a “chronic long-term disease” that they say can’t be cured, but I serve a God who works on His own term. I used to think I needed to be healed immediately, but now I’m learning how much I am growing out of this and whatever pain comes my way, it matters what I do with it and how I continue in my faith. I still believe this is only temporary pain, serving a long-term purpose.
“Jesus does not make light of pain. He relieved the suffering that comes from sickness (Matthew 4:23-24) and ached in the face of death” (John 11:32-36).