Ten years ago or more, I couldn’t understand “invisible illnesses”. They were those things that I heard people complain about, but thought to myself: But they look totally fine. Invisible illnesses are the ones that steal things from you, but the rest of the world can’t see. And, there are a lot of them.
Most invisible illnesses are not even fully understood, we know very little about them. They hide in plain site, and often go undiagnosed as we attribute our symptoms as aging. Or, they are misdiagnosed by doctors … and in many cases they are just simply dismissed. People with “invisible illnesses” are often considered hypochondriacs, making things up or making excuses for things they just don’t want to do. Some are given psychiatric care and medications for anxiety and depression.
This lack of treatment or mistreatment leaves the person no better than they started, and sometimes worse because the medications add to the problem instead of solving it. I didn’t understand invisible illness myself, and definitely could have been put into the camp of people who made cheeky comments about those who claimed to have one.
Then, I was diagnosed.
When you look at me, what you see is a person who looks totally normal. I’m not a svelt super model, long since have been the days where I could shop in the juniors section. What you don’t see is the war that goes on in my body every single day.
At first I dismissed my symptoms, thinking the toll of three children and getting older was to blame for how I felt. I thought it would be as simple as changing my diet, hitting the gym, taking a multi-vitamin and I would start feeling better. I just got worse.
My memory was shot. I used to be the type of person who could exist without a calendar, recalling details with ease. Now I was having to write down everything. As a trained actress, I learned to memorize & recall information quickly. Now I live with a phone full of alarms to even remember to do the things that are apart of my DAILY life. If I don’t write it down, count on the fact I won’t remember it.
My brain is in a constant state of fog. Some days it is as if someone just pulled the plug on my brain and all the information drained out. I can be listening to a speaker or reading a book, and find it absolutely impossible to comprehend what they are saying. This is why I am a fastidious note taker. I need to be able to read through it later to comprehend it, when I am in a clearer state of mind.
My energy is a small percentage of what it once was, some days it is a battle to just exist. I can see the things that need to get done, but I just can’t. There are days where my skin literally hurts to be touched. There are days where my body is swollen to the point it aches. Add in night sweats, body tremors, fatigue and exhaustion and it doesn’t get much better.
For my particular disease there are over 300 possible symptoms. I have a prescription medication that I will take for the rest of my life. I have 14 supplements that I take due to deficiencies in my body. I see several doctors to address the various ways my disease impacts my body. I’m giving vials of blood every three months to see what is working, what isn’t, and what has changed. Dosages increased. Supplements added or removed. Try this. Try that. Knowing that no matter what I will never get back to where I was, I will never be cured, or 100% better. Instead I’m just trying to make the best of what I have been dealt.
Some days, it takes me really … really low. But, then there will be spikes when I have energy, and my outlook on life is a lot more positive. I try not to burden others with my illness, and I do believe in part it is because I know they simply will never totally get it.
It’s a daily battle. It’s my daily grind.
Will today be a good day? A bad day? Will I give into those feelings and symptoms, or will I push through them? Is today a day I just need to stop and relax?
I have prayed for answers, and for healing. I believe with all sincerity in miraculous healing. Yet, I have never been angry with God that I am still sick. It doesn’t diminish my faith or increase my doubts about God. In fact, it strengthens them. My faith is stronger, because I am not relying on myself.
My Pastor’s wife once called me “high capacity”. If you talk to others who know me, they will agree with that. I am a person who gets things done, quickly, and efficiently. I can multitask with the best of them. As much as I am a creative person, I also have a gift for administration. I’m usually the person you want on your team, I thrive on deadlines, and I always give my best.
If this is how they see me now, since being diagnosed, can you only imagine what I was like before I was sick? It would make your head spin.
The difference between now, and then, is that today I do not work in my own strength. Everything that I do… is in HIS strength. He gives me the energy, drive, and motivation. He gives me the physical strength and mental capacity. When I look at what is accomplished I can ONLY give HIM the glory. My flesh is weak, tired, and broken. His power is perfected in my weakness. My joy comes from the Lord. My peace is from Christ. My strength is from the Holy Spirit.
My thorn keeps me meek, humbles me… so that I do not exalt myself and what I am capable of. Instead I keep my eyes on the Lord, where my strength comes from. I know that He goes before me, and comes up behind. I know that He shields me and protects me. He will give me charge to battle, or call me to lie and rest. He is the one who provides the words, lays out my path, and guides my journey. I simply say: Here I am Lord, use me.
2 Corinthians 12:7-9
7Because of the surpassing greatness of the revelations, for this reason, to keep me from exalting myself, there was given me a thorn in the flesh, a messenger of Satan to torment me– to keep me from exalting myself! 8Concerning this I implored the Lord three times that it might leave me. 9And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me.…