Thursday, September 13, 2012

National Invisible Illness Awareness Week 2012

This week is National Invisible Illness Awareness Week!
The theme this year is "Have an invisible illness? Share your visible hope"! I love this theme. Hope is one of most important things you need when you have a serious illness, especially an invisible illness. 

"We have this hope as an anchor for the soul, firm and secure" Hebrews 16:9

"Let us hold unswervingly to the hope we profess, for He who promised is faithful." Hebrews 10:23

There are so many people who have invisible illnesses. What does having an invisible illness mean? It means that you get told...

"You look great!" even when you're feeling terrible. 
"I can tell you feel better because you look good!"
"I'm so glad you could be here. I'm glad you are finally getting some relief".
"You look better so I'm so glad you're well now!" 
While we appreciate that we look good, it's so hard to get people to understand how sick we are when we look normal. Of course I want to look great and love when people tell me I do, but sometimes I wish my illness was visible because maybe people would be more understanding. There are times when my illness is visible because I'm pale, have gray skin, am hooked up to IVs, look in pain, park in handicap parking, or have to use a wheelchair. But most of the time I look normal.
People don't understand how you can look normal but claim to be so sick. Many times you will lose friends because they think you are faking it. I have lost friends because of that. Doctors will send you away because you look "okay". I have a handicap parking permit because I can't walk very far, and I need to save my energy for actually doing whatever needs to be done, and not use my energy walking in from the parking lot. Just walking in the parking lot will wear me out. I can't even count the number of stares I get because I don't look like I need to park in handicap. People judge you a lot. 
When you finally get up the strength to leave the house because you feel like you've been hit by a truck, the last thing you want to hear is how good you look. We just want someone to validate how bad we feel and how hard we worked just to leave the house. When you look good all the time, people assume you are better and feeling okay. That's not how it works with invisible illnesses and it's so hard to get people to understand how hard it is. Just because I am out of the house or say that I feel better, doesn't mean that I am better. I might be feeling better that day, but I still have good days and bad days. Good days to me still involve chronic pain, fatigue, brain fog, nausea, and weakness to name a few symptoms. There isn't a day when I don't hurt somewhere despite the pain medicine. Most times you wouldn't know that from looking at me. 
That is what living with an invisible illness means. What is horrible is that there are so many people who suffer silently because people don't believe that they can be so sick and still look "normal".
This questioner came from the invisible illness website and I've posted it before, but I've updated my answers. 
30 Things You Might Not Know About My Invisible Illness
(I have a problem with just picking one answer for each question, so I give more than one!)
1. The illness I live with is: Late Stage Neurological Lyme Disease, Fibromyalgia, multiple co-infections (Babesiosis, Bartonella, Ehrlichiosis, and other infections)

2. I was diagnosed with it in the year: 2008. I was 15 years old and a sophomore in high school. I had been sick since I was in 8th grade. I was diagnosed in Reno, Nevada (remember I live in Oklahoma) where we found a clinic that specializes in hard to treat diseases such as Lyme, MS, Lupus, Arthritis, auto-immune diseases, and even cancer. So I have to travel across the country to see my doctor. 

3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: realizing that this is a chronic illness and being taken out of the fun teenage world and thrown into the adult medical world. 
5. Most people assume: that if I'm out of the house I feel good. And if I'm having a good day, that means I'm completely better and can do everything again. That's not how it works though.. One step forward, three steps back. When I'm having a "good" day it still means that I'm in pain, exhausted, nauseous from the pain, weak, and taking lots of medicine. 
6. The hardest part about mornings are: waiting for the strong sleep medicine to wear off and dealing with unrestful sleep through the night. Also feeling like you've been hit by a truck because you don't have any pain medicine in your system. 
7. My favorite medical TV show is: Too many. A couple are House and Saving Hope (but unfortunately it's being cancelled)
8. A gadget I couldn’t live without is: Computer and phone. If you're not feeling well, that's the only way to keep in contact with people! And, I get medicine reminders on my phone which helps a lot!
9. The hardest part about nights are: being so exhausted and still not being able to sleep from the pain.
10. Each day I take: actually right now not many medicines. We've been working on pain management currently. So I'm on lots of pain medicines, sleep medicine, nausea medicine, and other medicines. Most of medicines right now are "comfort" medicines if that makes sense. I still do IV fluids at home through my port sometimes and occasionally do shots. When I'm on treatment to kill the bacteria, I take over 20 pills a day (or more, I lost count a long time ago), several shots, IVs, and lots of liquid medicines.
11. Regarding alternative treatments I: completely believe in them. I am on alternative treatments because I can't handle regular treatments.
12. If I had to choose between an invisible illness or visible I would choose: Something besides Lyme that is so politically split, has no recognition, and that doctors will actually treat. 
13. Regarding working and career: I am now able to take three classes in college! After missing three years of high school, I was still able to graduate from the homebound program. I started college last year and just took a couple classes. I lived on campus first semester last year, but moved home second semester because I was having some set backs. I live on campus again, and am taking 8 hours which is the most I've ever taken! It's very difficult still, but I'm hanging in there. 
14. People would be surprised to know: I secretly laugh when people tell me how strong I am. So you're telling me I'm strong for fighting for my life? I'm just trying live, not be strong. It's something that has to be done and there's no way around it. I also laugh because I'm not strong. My God is strong and through Him I am strong. ONLY through Him. I do appreciate being told I'm strong, but it's not me, it's Him.
15. The hardest thing to accept about my new reality has been: the unknown and controversy about my disease. We have to make medical decisions because most doctors won't treat me. It's so hard to have a disease that the government says doesn't exist, therefore we have to stay under the radar with it. But that doesn't mean we don't spread awareness. It's so difficult to have your doctor across the country and not within driving distance. Also, that this disease is in the late stage and neurological. It's hard to accept that when I'm only 19 years old and got sick when I was in 8th grade.
16. Something I never thought I could do with my illness that I did was: help give others hope and give advice about treatments to people literally all over the world through my blog. 
17. The commercials about my illness: Don't exists where I live.
18. Something I really miss doing since I was diagnosed is: Singing, having energy, being able to remember things. My memory is so bad because of the disease being neurological. I don't remember most of the past several years since I got sick. 
19. It was really hard to have to give up: Everything. My independence. So much has been taken away.
20. A new hobby I have taken up since my diagnosis is: Blogging and trying to spread awareness for this disease. Through my blog, God has used me to listen to others and help them since I've been through it. 
21. If I could have one day of feeling normal again I would: Do normal teenage things with my friends, not worrying about being too tired or in too much pain. Also, not having to worry about if I'll be too out of it from pain and nausea medicine to do anything. 
22. My illness has taught me: to cherish the small things like being able to get out of bed and walk. That God really does have a plan for me, even if it is way different than what I had planned for me. He knows my past and most importantly my future, and eternal future, so He really does work all things out for good even when I can't see it. 
23. Want to know a secret? Even though I hate this disease I wouldn't change anything. I'm so much more aware of my blessings and helping others. I've grown so much more closer to God and can really see why He put me here when He did. 
24. I love it when people: visit me or send me encouraging messages to show that they support me.
25. My favorite motto, scripture, quote that gets me through tough times is: "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26
26. When someone is diagnosed I’d like to tell them: Do research for yourself and trust God. If you trust Him and His plan you can get through anything.
27. Something that has surprised me about living with an illness is: How many things we take for granted.
28. The nicest thing someone did for me when I wasn’t feeling well was: actually tell me how sick I look. Thank you for validating how horrible I feel!
29. I’m involved with Invisible Illness Week because: I don't want anyone to have to go through what I've gone through. But, I wish everyone could learn what I've learned without having to go through what I've gone through. 
30. The fact that you read this list makes me feel: very, very blessed. I hope you understand how many people are silently hurting. But, I hope you know that we will not let this disease overcome us!

So yes, I have an invisible illness. I've had symptoms for 7 years (and I'm only 19) and will most likely have symptoms for a while since it is chronic and neurological. That doesn't mean that I don't believe that God can or will heal me. He may choose to heal me on this earth, but even if He doesn't, I know that I will forever be healed one day in Heaven. 

I have an invisible illness, but I pray that my hope is not invisible. I have the greatest hope there is! God promises us so much through His son if we believe in Him. He is my hope and that's all I need! 

I pray that you don't just look at these verses under this as just another list of verses, because they aren't. This is where I get my visible hope. I've seen what God can do and I want other to see God when they look at me. I want them to see my life and see that I live differently, even when I'm sick, because I have hope and joy and peace through Christ! If you want to know more about this hope, I would LOVE to tell you!
"Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many." 2 Corinthians 1:8-11

"With that same spirit of faith we also believe and therefore speak,  because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you in his presence. All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.
16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:13-18

"Therefore my heart is glad and my tongue rejoices; my body also will live in hope" Acts 2:26

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow withhope by the power of the Holy Spirit." Romans 15:13

"We have this hope as an anchor for the soul, firm and secure" Hebrews 16:9

"Let us hold unswervingly to the hope we profess, for He who promised is faithful." Hebrews 10:23

Thank you for reading and for your support and prayers!!
Check out the invisible illness website to see how you can help.

1 comment:

  1. Thank you for sharing! I appreciate you taking time and energy to share some of your experience with us.