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Monday, September 12, 2011

National Invisible Illness Awareness Week

Last year I wrote a post about National Invisible Illness Awareness Week. I got a lot of comments with how helpful the post was, so I'm going to post it again! This week is National Invisible Illness Awareness Week. 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!"
"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".
While we appreciate that we look good, it's so hard to get people to understand how much we are suffering because 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, have a PICC line in my arm, 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. Doctors will send you away because you look "okay".
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.
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". The theme this year is meant to get people to just help one person who suffers. One of the best things you can do for a chronic illness is leave random notes for the person suffering that will make them laugh or tell them that you are behind them 100%.
This questioner came from the invisible illness website.
30 Things You Might Not Know About My Invisible Illness

1. The illness I live with is: Lyme Disease, Fibromyalgia, Babesiosis, Bartonella, Ehrlichiosis, and other infections
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: 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 might not feel good. A good day for me could be equivalent to a bad day for a normal person.
6. The hardest part about mornings are: waiting for the strong sleep medicine to wear off and dealing with being sick all through the night.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: Iphone and computer. When you're homebound, that's the only way to talk to people sometimes.
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 over 20 pills, 2 or more shots, IVs, tons of liquid medicines.
11. Regarding alternative treatments I: completely believe in them. I am on alternative treatment because I can't handle regular treatments.
12. If I had to choose between an invisible illness or visible I would choose: Anything besides Lyme that is so politically split and has no recognition.
13. Regarding working and career: I do school from home. I haven't been to school since November 2008.
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. Also, the fact that I spend the majority of my time hooked up to IVs, taking medicine, spending all day at the doctor in the in the hospital.
16. Something I never thought I could do with my illness that I did was: help give others hope.
17. The commercials about my illness: I haven't seen any.
18. Something I really miss doing since I was diagnosed is: Going to school and being a teenager
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: Trying to spread awareness about this disease. Talking to people and actually listening.
21. If I could have one day of feeling normal again I would: Do normal teenage things with my friends, not worrying about medicine schedules.
22. My illness has taught me: to cherish the small things like being able to get out of bed and walk.
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.
24. I love it when people: visit me or send me a text or message saying 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.
30. The fact that you read this list makes me feel: very very blessed. I hope you understand how many people are silently hurting. We really can change the world one person at a time.
Thank you for reading and for your support and prayers.
Check out the invisible illness website to see how you can help.
http://invisibleillnessweek.com/

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