NICIAW - Depression, PTSD, Arthritis, Ligament Damage

Ruth writes:

1. The illness I live with is: Depression, PTSD, arthritis and serious ankle ligament damage/foot bone spur from an old injury.

2. I was diagnosed with it in the year: 1995 onward's, various things diagnosed over the years. Injury happened in 1990, or 1991, can't quite remember.

3. But I had symptoms since: With the depression, looking back I realize I've suffered for as long as I can remember.

4. The biggest adjustment I’ve had to make is: Not being able to hold down a job.

5. Most people assume: There is nothing wrong as none are immediately visible, although I use crutches a lot more these days.

6. The hardest part about mornings are: Getting up and getting motivated, especially if I'm in a lot of physical pain, it does have a knock on affect.

7. My favorite medical TV show is: n/a.

8. A gadget I couldn’t live without is: My computer, linked to the internet, as they provides me with a way of connecting with people. Also, reading and music, so my Kindle and iPod.

9. The hardest part about nights are: Dealing with the insomnia, nightmares and pain control.

10. Each day I take __ pills & vitamins. (No comments, please) - Two types of anti depressants, pain killers, one of two types depending on the level of pain. Sometime I also require sleeping tablets.

11. Regarding alternative treatments I: Have found Reiki useful in helping me relax.

12. If I had to choose between an invisible illness or visible I would choose: visible!

13. Regarding working and career: I had to give up work back in 1995, and again in 2006. I really miss it, and wish I could do more.

14. People would be surprised to know: How much physical and emotional pain I am in every day as I have got used to hiding it very well.

15. The hardest thing to accept about my new reality has been: Not being able to work.

16. Something I never thought I could do with my illness that I did was: Have to courage to try and spread awareness by doing things like filling in this form.

17. The commercials about my illness: Can't say I've really seen any.

18. Something I really miss doing since I was diagnosed is: Riding horses.

19. It was really hard to have to give up: Work and riding horses, and I had worked with animals professionally ..

20. A new hobby I have taken up since my diagnosis is: None.

21. If I could have one day of feeling normal again I would: Treasure every moment.

22. My illness has taught me: To be patient with myself.

23. Want to know a secret? One thing people say that gets under my skin is: 'It doesn't look/seem that bad.' Or a Doctor that once said. 'It could have been worse.' ... I think the only thing that is worse than being subjected to child abuse would have been if they had killed me!

24. But I love it when people: Say something spontaneously that make me realize I'm not 'lazy' and that I am justified in feeling like I do. Especially when it comes from somebody I have a huge amount of respect for. Happened last year, and whenever I need to remind myself that I am allowed to feel like this I remember what they said. was a very affirming moment.

25. My favorite motto, scripture, quote that gets me through tough times is: A quote from the After Silence store. 'You thought you'd destroy me, but you only made me stronger.'

26. When someone is diagnosed I’d like to tell them: It does get easier to live with what you are going through, it takes time, be kind to yourself in the meantime.

27. Something that has surprised me about living with an illness is: How much people can wrongly assume what you are capable of.

28. The nicest thing someone did for me when I wasn’t feeling well was: Provided me with a safe haven.

29. I’m involved with Invisible Illness Week because: It's time the barriers of ignorance were pulled down, and the only way to do that is to debunk the myths by speaking up about our experiences so people don't have the grounds to assume.

30. The fact that you read this list makes me feel: Hopeful that slowly people are recognizing that illness covers more than they perhaps realized before

NICIAW - Eczema, Asthma, Allergies

Kay writes:

1. The illness I live with is
Its chronic allergies really. I'm atopic with eczema, asthma and hayfever with allergies to soap, most cosmetic products, fragrances, colourants, dust, fur/feather bearing animals and even pineapple and kiwi fruits. Lately I seem to have added water to the list.
2. I was diagnosed with it in the year 1985

3. But I had symptoms since:
All my life.

4. The biggest adjustment I’ve had to make is:
Not using any soaps, perfumes or shampoos. I can only use detergents suitable for sensitive skins without added fragrances or fabric softeners.I also have a skin maintenance regime and need to walk with creams every where I go to keep my skin constantly hydrated so its less likely to break down. I also have a supply of a variety of gloves to use for household chores. I keep clothes that are worn close to the skin restricted to natural fabrics as is possible. This isn't easy when it comes to shopping for bras
5. Most people assume:
That because I don't use soap my hygiene must be bad. They also assume that the allergies can be ignored so they expect me to be volunteering to do the washing up when I visit them when they have not provided any protective wear for me. Its even worse when something needs cleaning up and they try to give me a soapy cloth to wipe things up. I can't touch that with my bare hands and not suffer for it.

6. The hardest part about mornings are:
If its a good day then there's the bath and body creamings to go through. On a bad skin day I'd see what damage I'd done whilst sleeping to my inflamed skin. I can sometimes scratch in my sleep which leads to bleeding. I've even put on cotton gloves as scratch mitts when things were really bad. A bad skin day can mean I also begin with unwrapping clingfilm bandages that covered the worse affected areas over night. I also have to hope that this latest bath doesn't leave me coming out stinging in pain from head to foot due to the latest reaction I'm having with water.

7. My favorite medical TV show is:
Don't really have one

8. A gadget I couldn’t live without is:
A washing machine. With all those creams I go through a lot of bed linen quickly. they do rub off on the sheets. I tried using the laundrette when my washing machine was broken and I was waiting to get a replacement. It was a nightmare

9. The hardest part about nights are:
On a good night its just creaming up and hoping its enough to keep most itching at bay. On a bad night itching may keep me awake. A bad skin day could mean putting on extra cream and doing the clingfilm bandage wrap over the worse affected area.
10. Each day I take __ pills & vitamins. (No comments, please)
Its just the one extra strong antihistamine. Its all about the creams and bath oils for me. Thankfully I haven't had to use an inhaler for a while.

11. Regarding alternative treatments I:
There's nothing available currently within my means or access.

12. If I had to choose between an invisible illness or visible I would choose; A broken arm since it would heal and improve. People also wouldn't ignore it if it restricts/changes the way you do things.

13. Regarding working and career:
It does make it difficult for me to do certain jobs. I have tried and can only manage up to a certain limit.

14. People would be surprised to know:
That I adore animals especially the furry ones though I should stay away from them. My immune system isn't low.

15. The hardest thing to accept about my new reality has been:
Its not going to go away.

16. Something I never thought I could do with my illness that I did was:
I haven't really explored that as yet.

17. The commercials about my illness:
The nearest I've ever seen is when they have the annual hayfever treatments ads there's nothing on skin stuff.

18. Something I really miss doing since I was diagnosed is:
This would be a bit after diagnosis, I miss having a pet I could pet
19. It was really hard to have to give up:
That'd be the furry pet again.

20. A new hobby I have taken up since my diagnosis is:
Hmmm that would be swimming and taking long walks. Swimming did help my lungs regarding the asthma. Though I may have to stop the swimming over the water thing now.

21. If I could have one day of feeling normal again I would:
Have a bubble fight and be okay hugging someone who wore lots of perfume and body spray.

22. My illness has taught me:
There's more than one way of doing things

23. Want to know a secret? One thing people say that gets under my skin is:
Take more vitamins to boost your immune system. I am not malnourished and my immune system is not low its over active.

24. But I love it when people:
Don't spray around lots of air fresheners

25. My favorite motto, scripture, quote that gets me through tough times is:
I'll have to work on that one

26. When someone is diagnosed I’d like to tell them:
Start up a creaming regime and your good hygiene can still be maintained.

27. Something that has surprised me about living with an illness is:
It doesn't define me as a person.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Washed my dishes.
29. I’m involved with Invisible Illness Week because:
Jen asked.

30. The fact that you read this list makes me feel:
OK

NICIAW - ADHD, Depression, Anxiety

Chantel writes:

My name is Chantel and I was diagnosed with ADHD (attention deficit hyperactivity disorder) in 2000 when I was 9 years old. I showed signs of having it at a much earlier age but it is sometimes hard to differentiate between normal childhood inattentiveness and hyperactivity versus true ADHD. I also struggle with depression and anxiety as these play hand-in-hand at times with the ADHD.

It had always been hard for me to follow even the simplest of instructions; not because I wasn’t smart or didn’t know how but because my brain couldn’t slow down enough to even hear the whole set of instructions. I would only get bits and pieces of information at a time because my attention would wander off and on, thus getting me into trouble. I could NOT pay attention if my life depended on it. While all the other kids were outside at recess I was inside doing homework or sitting in time out because I also was always getting into trouble. I would blurt out answers or talk when I wasn’t supposed to. It made the other kids not like me. I was different. I got made fun of a lot. I didn’t like being the weird and annoying kid. I tried so hard to pay attention but my mind just wouldn’t let me. I couldn’t help it. Simple basic math homework of 15 question multiplication problems proved to take me hours and I would stay up bawling all night long because I thought I had to be the stupidest kid in the world. I had no self-worth or friends to speak of and the teachers were terrible to me. That all changed!

I got on medicine when I was 9 and it made such a difference! My C’s and D’s turned into almost all A’s and occasional B’s. Of course it took a lot of different medication changes to find my niche but I am so thankful! I also used behavioral therapy to help train my impulsiveness due to the ADHD.

I still have problems with ADHD in adult life though as it will be a life long struggle I am afraid. My grades did improve and I found out how smart I really was and that I was NOT stupid, but still I struggle with the social aspect of it now. I still am perceived as the “weird” one and frankly I don’t have too many friends and I think that is one of the worst parts of this: loneliness and rejection.

It really bothers me when people tell me to just “stop acting like that” and that I use it as a crutch because I do NOT. I don’t like having this. If I had to choose between a visible or invisible illness I would choose visible because at least I would be believed and get the support and validation that I need to keep going through the day when I become discouraged. Support makes such a difference. I read my Bible when I become discouraged. Philippians 4:13 is one of my favorite verses (among many) that helps me in life.

I chose to be involved in Invisible Illness Week because I wish to bring awareness to these types of illnesses. Just because a person has no physical indication that they are ill does not mean that they aren’t. I hope that the stigma associated with mental health illnesses and other illnesses that cannot be seen with the eyes one day lifts and is recognized and validated. I want it to be that we will no longer be seen as the “weird” or “crazy” ones because our illnesses cannot be seen; we will be seen for what we are: human beings deserving of support and understanding. Blessings to all of you

NICIAW - Fibromyalgia, Meniere's Disease

Izebell writes:

1. The illness I live with is:
PTSD, Fibromyalgia, Meniere's Disease, Tinnitus, Joint Hypermobility, Carpal Tunnel, Arm/hand nerve impingement, DDNOS, chondromalacia

2. I was diagnosed with it in the year:
Meniere's, tinnitus - 1995
Fibromyalgia - 2000
PTSD - 2005, 2006, 2011 (different docs)
the rest 2012
Chondromalacia - 1979

3. But I had symptoms since:
Fibro - Not sure
PTSD - 1970
Meniere's/tinnitus - 1995
Joint stuff - 1974
Carpal tunnel/nerve issues - 2006
DDNOS - 1976 (not really sure)
Chondromalacia - 1973

4. The biggest adjustment I’ve had to make is:
Giving up the things I enjoy doing and making sure I have a few days of rest built in after a busy day.

5. Most people assume:
That I am either just fine or complain a lot

6. The hardest part about mornings are:
Waking still feeling exhausted

7. My favorite medical TV show is:
Untold Stories of the ER

8. A gadget I couldn’t live without is:
My braces

9. The hardest part about nights are:
Not sleeping and being too exhausted to interact with My Beloved. There's nothing left for him.

10. Each day I take __ pills & vitamins. (No comments, please)
8 RX and 6 vitamins

11. Regarding alternative treatments I:
I have tried herbs, chiropractic, massage therapy, acupuncture, diet

12. If I had to choose between an invisible illness or visible I would choose:
Visible as people can then see something wrong and are more willing to help out

13. Regarding working and career:
I am probably going to have to stop working soon as my hands can't do it any more. Because of the fibro, it takes about 2-3 times longer for me to heal from surgery and I am having my right hand/arm fixed later this year.

14. People would be surprised to know:
How many illnesses I have.

15. The hardest thing to accept about my new reality has been:
The loss of social interaction due to the inability to participate in my favorite hobby

16. Something I never thought I could do with my illness that I did was:
Go on almost all rides at Disneyland - Tower of Terror is the best! (the virtual reality ones are out, however)

17. The commercials about my illness:
Don't exist

18. Something I really miss doing since I was diagnosed is:
Bowling but my body just can't do it any more

19. It was really hard to have to give up:
Quilting as it kept me sane and brought me joy.

20. A new hobby I have taken up since my diagnosis is:
Haven't found it yet as most involve my hands

21. If I could have one day of feeling normal again I would:
Hike a local mountain - 4 miles up and I did it once

22. My illness has taught me:
That God is in control and my strength and support come from Him. All others will fail me.

23. Want to know a secret? One thing people say that gets under my skin is:
You just need to exercise

24. But I love it when people:
Say "You don't look it!" when I tell them my age. I also like hearing "I understand".

25. My favorite motto, scripture, quote that gets me through tough times is:
I can do all things through Christ who gives me strength." Phil. 4:13 My life verse

26. When someone is diagnosed I’d like to tell them:
It can get better and you won't always feel like this.

27. Something that has surprised me about living with an illness is:
That pain is just a part of life and it's usually in the background except right now.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Bring us meals

29. I’m involved with Invisible Illness Week because:
Millions of people suffer and the public needs to be educated so they will stop saying stupid stuff.

30. The fact that you read this list makes me feel:
Validated

NICIAW - Pain

An unnamed reader writes:

I've had pain for years but due to being uninsured + in the United States ("greatest medical system in the world," I laughed when I found out people called it that) I've never been diagnosed with anything. I know that I have bone spurs in my feet. I hope I don't have arthritis, because my whole career is based on my ability to move, and if I lose my career I have nothing.

My best theory is that my cartilage was so worn down by the schedule I had to follow when I was trafficked that the bones began to grind together. I worked 20-22 hours a day every day for years. Every time I used to take a step the bones would grind. I just got used to it. There are no gadgets that help this, however I find it is very important to stay warm enough and I have rice bags that I heat up and use to soothe the joints. I'd say my greatest gadget is my pain tolerance, which is very very high.

I would not choose a visible illness over this. If I had a visible illness, I'd never be hired, and the amount of sympathy from other people would not be great enough to cover the loss. People would see my illness before they saw my accomplishments, I think, and things like that really annoy me.

If I could change one thing, I'd make the United States have a universal free health care system. I'll pay more taxes, certainly would be lower than the $200/month I would pay for private insurance if I had money like that.

NICIAW - Bipolar II and PTSD

Emily writes:

1. The illness I live with is: Bipolar II and PTSD

2. I was diagnosed with it in the year: 2002 (and PTSD again dx in 2006 after knee injury)

3. But I had symptoms since: 1985ish

4. The biggest adjustment I’ve had to make is: Unsure of how to respond to this

5. Most people assume: I'm normal, until they see it on paper, then assume I'm insane and should be locked away

6. The hardest part about mornings are: Waking up

7. My favorite medical TV show is: (used to be) ER

8. A gadget I couldn’t live without is: vibrator (yep--no men in this girl's life! ha ha) and Android phone

9. The hardest part about nights are: shutting off my mind to go to sleep

10. Each day I take __ pills & vitamins. (No comments, please) 4 RX and 2 OTC

11. Regarding alternative treatments I: have VERY recently started to do chiropractic and massage therapy (big hurdle letting people touch me!!)

12. If I had to choose between an invisible illness or visible I would choose: Visible: The general public seems to be okay with broken limbs, but not broken hearts or minds.

13. Regarding working and career: I get through

14. People would be surprised to know: They know pretty much all of it -- I have AMAZING coworkers and a great support system Monday-Friday!

15. The hardest thing to accept about my new reality has been: It's not new, been dealing for quite a while

16. Something I never thought I could do with my illness that I did was: go into public without panic attacks

17. The commercials about my illness: ARE there commercials!?

18. Something I really miss doing since I was diagnosed is: n/a

19. It was really hard to have to give up: NOT trusting people (I'm working on it!)

20. A new hobby I have taken up since my diagnosis is: being more social... not so much a "hobby" per say, but trying to get out and do more things in general

21. If I could have one day of feeling normal again I would: Pee my pants with excitement

22. My illness has taught me: how to be stronger and that I am more of a fighter than I ever thought I was

23. Want to know a secret? One thing people say that gets under my skin is: oh there are too many to list!

24. But I love it when people: Go out of their way to help others, big or small

25. My favorite motto, scripture, quote that gets me through tough times is: “I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they're right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall together.” ~Marilyn Monroe

26. When someone is diagnosed I’d like to tell them: Never been in that position

27. Something that has surprised me about living with an illness is: how close-minded SO many people are

28. The nicest thing someone did for me when I wasn’t feeling well was: my sister got me groceries so I didn't have to go out and deal with the world

29. I'm involved with Invisible Illness Week because: Jenn asked me to be

30. The fact that you read this list makes me feel: a little less alone

NICIAW - Pyoderma Gangrenosum

Jay wrote:

1. The illness I live with is:
Pyoderma Gangrenosum - you can't see it under the dressings I wear

2. I was diagnosed with it in the year:
2012

3. But I had symptoms since:
2010

4. The biggest adjustment I’ve had to make is:
Having periods of extreme inactivity in order to let lesions heal

5. Most people assume:
That the wounds are self inflicted, and/or that they hurt only as much as they look like they hurt.  They don't know the agony.  They also assume that traditional wound care is the best approach, when it really is not.

6. The hardest part about mornings are:
When a new lesion is forming and it has adhered to the dressing overnight, while the pain relievers have all worn off, and I have to not only unstick it but redress it before I can do simple things like walk around the house to prepare for my day.

7. My favorite medical TV show is:
I'm a House fan - I like dark humor.

8. A gadget I couldn’t live without is:
It's a toss up between Vaseline gauze and Duoderm - without either, I've got nothing I can use to put dressings on my wounds.

9. The hardest part about nights are:
The pain seems to creep in even more at night, probably for lack of distraction.  Laying awake from pain while so tired that tears are flowing gets old, fast.

10. Each day I take __ pills & vitamins. (No comments, please)
2 pain meds, and 5 other prescriptions

11. Regarding alternative treatments I:
Have only found alternative methods of advancing my condition; at this point, having found a system that works as well as medically expected, I am not interested in other options to try.  I am allergic to most dressings as well as many substances one might ingest. 

12. If I had to choose between an invisible illness or visible I would choose:
Invisible.  I prefer not to be the center of attention.

13. Regarding working and career:
The various things I have fought in the last several years have killed my career.  I work as a Martial Arts instructor part time, and the P.G. makes that occasionally nightmarish painful.

14. People would be surprised to know:
That I complain less and use less pain medication than is expected of someone in my condition.

15. The hardest thing to accept about my new reality has been:
That I can't just fix it, that I can't prevent it, and I can't really do anything about it once it flares up.

16. Something I never thought I could do with my illness that I did was:
Keep my leg - doctors were talking about amputation prior to diagnosis.

17. The commercials about my illness:
Don't exist.  It's a gruesome, painful illness but is thankfully pretty rare.

18. Something I really miss doing since I was diagnosed is:
Taking a long, hot bath.  I haven't had the chance since due to the constant lesions on my legs.

19. It was really hard to have to give up:
The long hot baths that I used to enjoy every night.

20. A new hobby I have taken up since my diagnosis is:
Wood working in earnest.

21. If I could have one day of feeling normal again I would:
Remember that hot bath idea?

22. My illness has taught me:
That people are quick to judge and slow to show empathy when they can't understand or explain something that is going on.

23. Want to know a secret? One thing people say that gets under my skin is:
"That looks absolutely disgusting."  Also, when they say "that doesn't look bad at all."

24. But I love it when people:
Just treat me like the regular person I am.

25. My favorite motto, scripture, quote that gets me through tough times is:
I can do all things through Christ who gives me strength.

26. When someone is diagnosed I’d like to tell them:
If a dressing seems not to be working - do something else.  And don't let anybody perform a debridement on your wound, it will only make things worse.

27. Something that has surprised me about living with an illness is:
How little support is actually available for someone in my situation.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Went and refilled my pain medicine prescription, then came back and made me dinner to eat with the pills.

29. I’m involved with Invisible Illness Week because:
It's important to raise awareness even of less common illnesses.

30. The fact that you read this list makes me feel:
Like I had a chance to be heard.

NICIAW - Year Two!

I am reposting this because I've received several entries already, but I don't want folks to forget - there are still two weeks left. Thank you all so much.  Even if you already submitted something last year, feel free to do so again this year.  You deserve to be heard.

Please visit This Link to learn more about National Invisible Chronic Illness Week.

Thousands, millions even, of people suffer with invisible illness. As months, weeks, and years go by, we learn to stay silent, to quit complaining, to "toughen up." We learn to not ask for support or help. We get tired of being a burden. Sometimes, we find ourselves dreading the next person who says "But you look just fine." This year, from September 10th - 16th, I will be publishing as many stories as are submitted to me. You can follow this checklist, or you can write it in any other format you choose. But try to view it as an opportunity to show the world what it is like to be you. It's important to me this year, to give my readers a voice. You can email me at kyukidojen@hotmail.com and I will gladly post on your behalf. Please include what you want me to call you in the post dedicated to you, and as well as you can, answer the following questions. It is time to see just how NOT alone we really are.

1. The illness I live with is:

2. I was diagnosed with it in the year:

3. But I had symptoms since:

4. The biggest adjustment I’ve had to make is:

5. Most people assume:

6. The hardest part about mornings are:

7. My favorite medical TV show is:

8. A gadget I couldn’t live without is:

9. The hardest part about nights are:

10. Each day I take __ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I:

12. If I had to choose between an invisible illness or visible I would choose:

13. Regarding working and career:

14. People would be surprised to know:

15. The hardest thing to accept about my new reality has been:

16. Something I never thought I could do with my illness that I did was:

17. The commercials about my illness:

18. Something I really miss doing since I was diagnosed is:

19. It was really hard to have to give up:

20. A new hobby I have taken up since my diagnosis is:

21. If I could have one day of feeling normal again I would:

22. My illness has taught me:

23. Want to know a secret? One thing people say that gets under my skin is:

24. But I love it when people:

25. My favorite motto, scripture, quote that gets me through tough times is:

26. When someone is diagnosed I’d like to tell them:

27. Something that has surprised me about living with an illness is:

28. The nicest thing someone did for me when I wasn’t feeling well was:

29. I’m involved with Invisible Illness Week because:

30. The fact that you read this list makes me feel:

NICIAW - Dissociative Identity Disorder NOS, PTSD, Depression, Anxiety

This is from an individual who did not provide a name to associate with his/her information.

1. The illness I live with is: Dissociative Identity Disorder Not Otherwise Specified, Post Traumatic Stress Disorder, Depression, Anxiety

2. I was diagnosed with it in the year: 1991

3. But I had symptoms since: I was a child.

4. The biggest adjustment I’ve had to make is: Making sure I feel safe.

5. Most people assume: I have my life together.

6. The hardest part about mornings are: waking up with hope about the new day

7. My favorite medical TV show is: MASH...an old one

8. A gadget I couldn’t live without is: computer

9. The hardest part about nights are: I have terrible nightmares.

10. Each day I take __ pills & vitamins. (No comments, please) 3 plus

11. Regarding alternative treatments I: am open to them

12. If I had to choose between an invisible illness or visible I would choose: invisible

13. Regarding working and career: I struggle to get by daily. I wear a mask.

14. People would be surprised to know: I was sexually, physically and emotionally abused from a very young age into adulthood.

15. The hardest thing to accept about my new reality has been: I will be healing the rest of my life.

16. Something I never thought I could do with my illness that I did was: have a professional career

17. The commercials about my illness: I don't know.

18. Something I really miss doing since I was diagnosed is: Not sure.

19. It was really hard to have to give up: Not sure.

20. A new hobby I have taken up since my diagnosis is: Not sure.

21. If I could have one day of feeling normal again I would: I don't know what "normal" is exactly.

22. My illness has taught me: to appreciate people and have compassion for others.

23. Want to know a secret? One thing people say that gets under my skin is: Why can't you just get over it?

24. But I love it when people: show care for hurt kids

25. My favorite motto, scripture, quote that gets me through tough times is: Philippians 4:13 "I can do all things through Christ who strengthens me." Also, "I yam who I yam." -- Popeye the Sailor

26. When someone is diagnosed I’d like to tell them: The diagnosis is not the total of who you are. You are so much more than someone with an illness.

27. Something that has surprised me about living with an illness is: not sure

28. The nicest thing someone did for me when I wasn’t feeling well was: Bought me and my family a Christmas tree one year when I was in the psych hospital.

29. I’m involved with Invisible Illness Week because: I was asked.

30. The fact that you read this list makes me feel: Cared about.

NICIAW - Interstitial Cystitis

Jay writes:

1. The illness I live with is:  Interstitial Cystitis

2. I was diagnosed with it in the year: 2005

3. But I had symptoms since: 2002

4. The biggest adjustment I’ve had to make is: learning to quickly find restrooms in public places, and learning how to *politely* skip to the front of the line if it's there.

5. Most people assume: I don't know.  I think most people don't assume anything, because I think most people don't think about it.

6. The hardest part about mornings are: waking up and feeling like my bladder is truly going to explode

7. My favorite medical TV show is: My family doesn't watch TV.

8. A gadget I couldn’t live without is: My computer, but that has nothing to do with the I.C.

9. The hardest part about nights are: being really sleepy and knowing I will have to get up in just a few hours to use the bathroom.

10. Each day I take __ pills & vitamins. (No comments, please) 1 Pill, Elmiron, 3 times daily.

11. Regarding alternative treatments I: believe in whole-body health, but I'm not aware of any alternative options specifically for the interstitial cystitis.

12. If I had to choose between an invisible illness or visible I would choose: visible.  It would get me to the front of the restroom line easier.

13. Regarding working and career: aside from once having to explain to my boss that my frequent bathroom breaks were medical in origin, this hasn't impacted work or career at all.

14. People would be surprised to know: that this disease actually does hurt a lot of the time.

15. The hardest thing to accept about my new reality has been: I don't know.  Reality hasn't really changed for me with this.

16. Something I never thought I could do with my illness that I did was: I have never thought my illness would hold me back from anything.

17. The commercials about my illness: There are commercials about I.C.?  Really?

18. Something I really miss doing since I was diagnosed is: Again, it hasn't really changed my life.  Though I do miss sleeping through the night.

19. It was really hard to have to give up: caffeine.  When the doctor suggested it, I said "No way."  But now, having finally done so... it does help.

20. A new hobby I have taken up since my diagnosis is: I organise bathroom races.  Okay.  No, I don't.  I don't have a new hobby.  I am hobby-impaired.

21. If I could have one day of feeling normal again I would: Go on a really long hike.  And not pee in the bushes.  I would hold it, until I was back to "civilization."

22. My illness has taught me: that self-pity is easy to do but hard to live with.  Positivity and a good perspective are harder to maintain, but easier to live with.

23. Want to know a secret? One thing people say that gets under my skin is: Be thankful it's nothing worse, and it's just your bladder.  "Just my bladder" actually really hurts and I really do not like being a slave to its whims.

24. But I love it when people: Graciously let me to the front of the line in the ladies' room without saying "You don't look pregnant, though"

25. My favorite motto, scripture, quote that gets me through tough times is:  "This, too, shall pass."

26. When someone is diagnosed I’d like to tell them: Take your meds, stop drinking caffeine, and remember - this is not a death sentence or even a serious life-impairment sentence.

27. Something that has surprised me about living with an illness is:  How resentful it makes me some days, and how even though it's not dangerous, it has made me contemplate things like a living will, what I want for myself when I get old, and what it's like for those who are seriously impaired by chronic illness that none of us can see.
28. The nicest thing someone did for me when I wasn’t feeling well was:  My doctor said "You could take this medication - it will help."

29. I’m involved with Invisible Illness Week because: I read about it on someone's blog and realized that this could be my one chance to complain about explain what it's really like.

30. The fact that you read this list makes me feel: like this blog author actually does post submissions from other people.

NICIAW - PCOS

This is from Dawn.  She has polycystic ovarian syndrome (also known as PCOS). 

In 1992 I had a period that lasted for 17 days. My mom, being concerned, took me in for my first ever "girly" doctor appointment. After the doctor examined me and asked me a few questions, he announced to my mom that I was still a virgin.. Oh, and that my body was producing a little too much testosterone. No big deal, he said and put me on birth control pills to help regulate my cycle.

I stayed on the pills until after college, but found as I got older that the pills were causing some emotional side effects that I didn't like. I figured I'd take my chances with the random cycles. Sometimes I'd go 6 or 7 months without a period then have it for a month straight with awful cramps. Since I never know when my period might come, or how heavy it might be, I learned to always be ready. I'd mention it from time to time to various doctors, even mentioning something that I'd heard of on a tv show called polycystic ovarian syndrome, but none of them seemed concerned.

Last winter I went in to the ER with the worst cramping and heaviest flow I had ever experienced. After a day of tests to make sure I wasn't having a miscarriage, the doctor came in and said, "Well, the bleeding is probably just your period... Oh, and your diabetic." And then he left. The nurse set me up with a follow up appointment for two weeks later and sent me home. 

That evening I stood in the grocery store for an hour, trying to figure out what a diabetic eats, I ended up crying in the middle of the store and leaving with out even getting anything. At the follow up appointment the intern ran a test that finally confirmed what I had suspected, I had a metabolic disease known as PCOS.

Since then I've learned what foods work for me and how to deal with my illness through diet and exercise along with some oral meds. I now read every label before I put anything in my mouth, check my sugars several times a day and carry pads with me all the time, just in case. I am also working on losing weight ( a exponentially more difficult task for those with PCOS) in order to manage the symptoms of this disease.

Most people assume that I must eat a lot and that is why I am overweight when in reality I probably take in fewer calories than most. (About 1500 a day) But my body can't process the glucose efficiently so it stores excess as fat. Because glucose is the body's fuel, and because my size has caused some issues with apnea, I am also tired most of the time.

One thing that people say that often gets under my skin is: "Should you be eating that/You can't have that!" People might be surprised to know that diabetics can eat anything they want. If I want a cookie, I have a cookie, but it may mean cutting out that baked potato or yummy slice of bread. I have a carb "budget" and I have to choose each day how to spend it with out going over.

Now that I am married, people also ask about children, sometimes even the most innocent question can be very hurtful to someone suffering from PCOS. Because of the cysts in my ovaries, becoming pregnant is a very difficult, if not impossible task. Once pregnant, the diabetic is high risk and carefully monitored. I would love to have a family, it is a heart's desire, but there is a lot of health stuff to deal with first.

I get frustrated with the commercials on TV that make diabetes an old person's disease, its not. Or that make it look like your are on the verge of death, with proper care, diabetes is manageable. Yes it is a daily part of my life, yes I've had to make some adjustments, and yes the PCOS has made each day a little more challenging, but when I am tired, I will rest, when I am hungry, I will eat, and while I am alive, I will live! 

Thank you for taking time to read this essay. My illness may be invisible, but because you read this, I am not!

NICIAW - Adult ADHD

This is from DJ.

1. The illness I live with is: Adult ADHD

2. I was diagnosed with it in the year: 1986

3. But I had symptoms since: 1981

4. The biggest adjustment I’ve had to make is: having to take medications.  I have to consciously monitor what I am saying and how I am interacting, to avoid being obnoxious.

5. Most people assume: I'm just obnoxious, but I have no "real problems."

6. The hardest part about mornings are: waking up, of course.

7. My favorite medical TV show is: Grey's Anatomy; House

8. A gadget I couldn’t live without is: my Smartphone

9. The hardest part about nights are: winding down so I can fall asleep

10. Each day I take wellbutrin and ativan for anxiety, & occasionally vitamins. (No comments, please)

11. Regarding alternative treatments I: sought God and won, for a while.

12. If I had to choose between an invisible illness or visible I would choose: visible, because then people would understand and know what I struggle with.  They wouldn't assume everything is fine, or that I just need to suck it up and deal with it.

13. Regarding working and career:  I have to be careful how I interact with coworkers so I am not overbearing or obnoxious in opinions and decision making.  Sometimes the ADHD causes me to "zone out" and I will spend several minutes staring at my screen, doing nothing.

14. People would be surprised to know: I'm a superhero at night.  No, really, I am.  Okay.  They would really be surprised to know that I am actually a very gentle, trustworthy man.

15. The hardest thing to accept about my new reality has been: knowing that something I thought was gone for the rest of my life has come back

16. Something I never thought I could do with my illness that I did was: give up medication.

17. The commercials about my illness: are actually pretty honest.

18. Something I really miss doing since I was diagnosed is: watching TV without it becoming all-consuming, and having conversations without a driving need to control what's being said.

19. It was really hard to have to give up: caffeine

20. A new hobby I have taken up since my diagnosis is:  computer programming.

21. If I could have one day of feeling normal again I would: finish at least one of the programs I have started.

22. My illness has taught me: patience.

23. Want to know a secret? One thing people say that gets under my skin is: "It was meant to be."

24. But I love it when people: recognize accomplishments for what they are.

25. My favorite motto, scripture, quote that gets me through tough times is: "I can do all things through Christ who strengthens me.  Philippians 4:13

26. When someone is diagnosed I’d like to tell them: that they can still do everything they enjoy, and that they can still succeed and do very well at whatever they want

27. Something that has surprised me about living with an illness is: The amount of support I get from my wife.

28. The nicest thing someone did for me when I wasn’t feeling well was: a guidance counselor allowed me to drop a class when I was in high school, when the teacher was not going to allow it.

NICIAW - DID, PTSD, Depression, Diabetes, Asthma, PCOS, NCAH

G didn't fill out a survey, but did share the following:

I previously suffered from DID, PTSD, and Depression. I have no current mental diagnosis, but I will NEVER be totally "over it." My physical challenges are visual impairment, diabetes, asthma, and PCOS (but I suspect the PCOS was a misdiagnosis and I may really have NCAH-- "invisible intersex"-- but I have no way to find out because I have no job and therefore no access to medical care.)

I'm not disabled enough to receive any kind of assistance but not able enough to receive unemployment (because I left my last job due to disability.) I am scratching out a living doing the only thing I can do with the resources available to me: sell my books. I made $60 last month. The toughest thing to live with about having a disability is being POOR.

NICIAW - Dissociative Amnesia or Dissociative Disorder NOS

The name I use here is going to be "BlackFrog."

1. The illness I live with is: Dissociative Amnesia or Dissociative Disorder NOS (not otherwise specified). But, have had several diagnoses over the years.

2. I was diagnosed with it in the year: 2011

3. But I had symptoms since: at least since 1979

4. The biggest adjustment I’ve had to make is: Accepting the latest diagnosis and dealing with what caused it.

5. Most people assume: That I'm too healthy to be that - I function too well.

6. The hardest part about mornings are: Getting motivated to live and do the basic parts of living.

7. My favorite medical TV show is: I don't watch any.

8. A gadget I couldn’t live without is: Anything that plays music

9. The hardest part about nights are: Getting proper sleep

10. Each day I take _0_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: Am open to any that may pass my way.

12. If I had to choose between an invisible illness or visible I would choose: Invisible.

13. Regarding working and career: I am considered permanently disabled by the federal government, but am a stay-at-home mom.

14. People would be surprised to know: How well I can pretend to be okay.

15. The hardest thing to accept about my new reality has been: Is that it was caused by what my father did to me.

16. Something I never thought I could do with my illness that I did was: Survive this long.

17. The commercials about my illness: don't exist.

18. Something I really miss doing since I was diagnosed is: Being clueless as to why I am the way I am.

19. It was really hard to have to give up: the concept that my mental health problems were organic.

20. A new hobby I have taken up since my diagnosis is: N/A

21. If I could have one day of feeling normal again I would: Take my children and go do the fun, normal things families do together.

22. My illness has taught me: How much damage the brain can do to itself just to protect itself.

23. Want to know a secret? One thing people say that gets under my skin is: When they tell me that the things I can remember are wrong. They tell me because I cannot remember so much, that I twist the memories I do have into pure fiction.

24. But I love it when people: Accept me as I am.

25. My favorite motto, scripture, quote that gets me through tough times is: "A child who can count to 5, sees infinity in a dozen eggs."

26. When someone is diagnosed I’d like to tell them: Be who you are... no label changes who you are.

27. Something that has surprised me about living with an illness is: How little people believe that I'm capable of having a bad day.

28. The nicest thing someone did for me when I wasn’t feeling well was: Compose an entire music album about my struggles.

29. I’m involved with Invisible Illness Week because: I was openly invited to and maybe someone will hear us.

30. The fact that you read this list makes me feel: Like you already know... or you're willing to learn. That makes you beautiful.

NICIAW - Pulmonary Fibrosis and Bronchiectasis

This is from Smurf.

1. The illness I live with is: Pulmonary Fibrosis and bronchiectasis.

2. I was diagnosed with it in the year: 2007.

3. But I had symptoms since: some symptoms present from birth which developed into above conditions.

4. The biggest adjustment I've had to make is: Regular hospital treatments/stays.

5. Most people assume: I have a bit of a cough, but otherwise am fit and healthy.

6. The hardest part about mornings are: Breathing.

7. My favorite medical TV show is: None, avoid them.

8. A gadget I couldn't live without is: Portable nebuliser that works in the car.

9. The hardest part about nights are: Breathing

10. Each day I take 30-57 pills & vitamins.

11. Regarding alternative treatments I: Try anything.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. on the rare occasions I wear oxygen nasal tubes in public I can't bare the looks of pity I get.

13. Regarding working and career: I am lucky to have an understanding employer

14. People would be surprised to know: I am scared about my condition and when I wear lipstick, its to hide that my lips are blue through low oxygen.

15. The hardest thing to accept about my new reality has been: Life expectancy and transplantation prospect.

16. Something I never thought I could do with my illness that I did was: Snorkel in the sea

17. The commercials about my illness: I don't know.

18. Something I really miss doing since I was diagnosed is: Not worrying about medication and correct dosages and times.

19. It was really hard to have to give up: The partying lifestyle

20. A new hobby I have taken up since my diagnosis is: None

21. If I could have one day of feeling normal again I would: Go scuba diving and run everywhere

22. My illness has taught me: To take each day as a new one

23. Want to know a secret? One thing people say that gets under my skin is: I thought you were a smoker coughing like that.

24. But I love it when people: Don't underestimate my capabilities when they know of my condition.

25. My favorite motto, scripture, quote that gets me through tough times is: 'Thats life'

26. When someone is diagnosed I'd like to tell them: Don't just see a death sentence

27. Something that has surprised me about living with an illness is: The amazing people I have met along the way.

28. The nicest thing someone did for me when I wasn't feeling well was: Arrange a surprise birthday party when I was in hospital- everyone on the ward got involved and had fun.

29. I'm involved with Invisible Illness Week because: the saying 'don't judge a book by its cover' came to mind when reading about it.

30. The fact that you read this list makes me feel: Heard

NICIAW - Migraines, PTSD, Depression, Alcoholism, Fibromyalgia, Sleep Apnea, Graves Disease, Hypthyroidism

This post comes from Sola
1. The illness I live with is: Migraines, PTSD, Depression, Alcoholism, Fibromyalgia, Sleep Apnea, Graves Disease, Hypothyroidism

2. I was diagnosed with it in the year: Migraines: 1994, Alcoholism PTSD and Depression: 2004, Fibromyalgia and Sleep Apnea: 2007, Graves Disease and Hypothyroidism: 2010

3. But I had symptoms since: as long as I can remember.

4. The biggest adjustment I’ve had to make is: Learning to ask for help, accepting that I can't be totally self-sufficient, and lowering my expectations for what I can do in a day.

5. Most people assume: I'm young and healthy

6. The hardest part about mornings are: Getting out of bed when I'm in pain and my body doesn't want to move

7. My favorite medical TV show is: Grey's Anatomy

8. A gadget I couldn’t live without is: Pill Sorter

9. The hardest part about nights are: Being alone with memories of my abuse and convincing myself to go to bed when that's where I was hurt.

10. Each day I take __ pills & vitamins. (No comments, please) 22-32

11. Regarding alternative treatments I: get massage, see a chiropractor and meditate. I think it's frustrating that insurance doesn't pay for the things that help me the most.

12. If I had to choose between an invisible illness or visible I would choose: Visible

13. Regarding working and career: I haven't been able to work in 18 months. I miss my job, having somewhere to go every day where I felt useful and could help people. I'm in school, but I don't know if I will ever be able to work again. I hate it when people ask me how my job is going because I feel so ashamed that I am not able to work.

14. People would be surprised to know: I dream of hiking and rafting the Grand Canyon some day, but don't know if I will ever be able to.

15. The hardest thing to accept about my new reality has been: That I'm too sick to be able to hold down a job and show up every day.

16. Something I never thought I could do with my illness that I did was: Learning to stand up for my needs with doctors. Getting over my fear of needles and talking about really intimate body functions.

17. The commercials about my illness: make it sound like I could just take a pill and make it all better. Don't exist for PTSD, migraines, Graves disease or hypothyroidism.

18. Something I really miss doing since I was diagnosed is: Yoga, kayaking, hiking, swimming on a team,

19. It was really hard to have to give up: my job

20. A new hobby I have taken up since my diagnosis is: Knitting

21. If I could have one day of feeling normal again I would: Go White Water Rafting

22. My illness has taught me: To appreciate every day and the little things. Not to take anything for granted

23. Want to know a secret? One thing people say that gets under my skin is: That people on public assistance are lazy

24. But I love it when people: Listen. Sit with me when I cry. Give me hugs. Acknowledge how much I have been through. Tell me I'm a strong survivor, brave or that they admire me.

25. My favorite motto, scripture, quote that gets me through tough times is:
"Somebody told me that the darkest hour comes right before the dawn,
And I will find my way back to myself if I could just hold on,
Hold on,
To the light.
And it's going to be all right.
I know it's going to be all right.
Cuz love is on your side.
Don't fear your life.
Cuz it's going to be all right."
  ~"Dawn" by Gina Bredlove (it's a song)

26. When someone is diagnosed I’d like to tell them: Just live in today

27. Something that has surprised me about living with an illness is: that everything I go through makes me stronger

28. The nicest thing someone did for me when I wasn’t feeling well was: When my girlfriend tells me she loves me and wants to be in my life despite the fact that I'm not always able to do fun things.

29. I’m involved with Invisible Illness Week because: I want people to stop and think that every person you meet is going through something and doing the very best they can with what they have.

30. The fact that you read this list makes me feel: Hopeful that someone will work to make more resources available to struggling people.

NICIAW - MS and/or Lyme Disease

From Liz
1. The illness I live with is: Either Lymes Disease or Multiple Sclerosis. Not sure.

2. I was diagnosed with it in the year: January 2011

3. But I had symptoms since: worst symptoms in December 2011

4. The biggest adjustment I’ve had to make is: learning what I can and can’t do

5. Most people assume: that I am perfectly healthy

6. The hardest part about mornings are: knowing I have to get up and give myself a shot, every day!

7. My favorite medical TV show is: Greys anatomy

8. A gadget I couldn’t live without is: Autoject 2 that helps with the injections so I don’t actually have to stick the needle in.

9. The hardest part about nights are: Sometimes getting to sleep

10. Each day I take _0_ pills & 1 vitamins. (No comments, please)

11. Regarding alternative treatments I: have seen a homeopathic doctor for the lymes.

12. If I had to choose between an invisible illness or visible I would choose: visible

13. Regarding working and career: been trying to figure out things that I will be able to do

14. People would be surprised to know: that I am still as active as I ever was. Besides my eyes and fatigue, it hasn’t slowed me down a whole lot

15. The hardest thing to accept about my new reality has been: the fear of what the future might be

16. Something I never thought I could do with my illness that I did was: Continue being a wildland firefighter.. but have kinda decided to move on to something less strenuous.

18. Something I really miss doing since I was diagnosed is: having the freedom to eat whatever I want because of the drugs ive been taking for the Lymes

19. It was really hard to have to give up: Sugar

21. If I could have one day of feeling normal again I would: not want it to end and make the best of it

22. My illness has taught me: To be patient and try to do the best I can and appreciate the people around me.

24. But I love it when people: are just willing to listen to my complaints

26. When someone is diagnosed I’d like to tell them: it sucks, but just take things day by day and learn how you are going to move on and live with it.

27. Something that has surprised me about living with an illness is: how quickly symptoms show up and how long it takes for them to go away.

28. The nicest thing someone did for me when I wasn’t feeling well was: Wasn’t Able to drive for a while this summer because of my eyes acting up, so My mom drove to Northern Minnesota to pick me up, and my Father in Law took me back

29. I’m involved with Invisible Illness Week because: Its not fun not feeling good, and having vision problems for months at a time and no one else can see it.

30. The fact that you read this list makes me feel: Happy to know someone cares

NICIAW - Fibromyalgia

This is from Twich.  Twich lives with Fibromyalgia.

1. The illness I live with is: Fibromyalgia

2. I was diagnosed with it in the year: 2010

3. But I had symptoms since: 1984

4. The biggest adjustment I’ve had to make is: trying to pace myself.

5. Most people assume: I'm just lazy and flaky.

6. The hardest part about mornings are: Not feeling refreshed and the pain caused by morning stiffness.

7. My favorite medical TV show is: Mystery diagnosis.

8. A gadget I couldn’t live without is: The iPod touch app that keeps track of my meds.

9. The hardest part about nights are: Trying to sleep.

10. Each day I take: 8- 12 pills & 2 vitamins. (No comments, please)

11. Regarding alternative treatments I: Use various types and believe in most alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose: Visible.

13. Regarding working and career: I may have to quit, if I can keep on with my job, I've been told I need to have a "Modified work description" Meaning drastically less hours and responsibilities than I'm used to.

14. People would be surprised to know: My pain level is significant and constant, I just don't talk about it often.

15. The hardest thing to accept about my new reality has been: That it affects EVERY aspect of my life, both mental and physical.

16. Something I never thought I could do with my illness that I did was: maintain a social life.

17. The commercials about my illness: Don't really cover a fraction of what this illness is really like.

18. Something I really miss doing since I was diagnosed is: 4 hour walks with friends.

19. It was really hard to have to give up: Pushing my limits.

20. A new hobby I have taken up since my diagnosis is: It's not new, but I paint more.

21. If I could have one day of feeling normal again I would: Go got a run or long walk.

22. My illness has taught me: To slow down sometimes and take care of myself.

23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!"

24. But I love it when people: say "I understand, that must be hard."

25. My favorite motto, scripture, quote that gets me through tough times is: Improvise, adapt, overcome.

26. When someone is diagnosed I’d like to tell them: Don't give up, it gets easier to live with.

27. Something that has surprised me about living with an illness is: How different it feels when you have a reason for feeling this way.

28. The nicest thing someone did for me when I wasn’t feeling well was: When my little sister drew me a get well picture

29. I’m involved with Invisible Illness Week because: It's important to spread awareness- Just because you can't physically see it, doesn't mean it's not just as debilitating.

30. The fact that you read this list makes me feel: Like I may have made a difference.

NICIAW - Anemia (Iron Deficiency)

This is from Niccy:

1. The illness I live with is: Iron Deficiency Anemia

2. I was diagnosed with it in the year: 2001

3. But I had symptoms since: 1998

4. The biggest adjustment I’ve had to make is:  Getting regular blood draws, and having to miss school, work, and life in general on days when I'm just too tired

5. Most people assume: I am just lazy and whine a lot

6. The hardest part about mornings are: Forcing myself to get out of bed when just moving is hard to do

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: My cell phone (what does that have to do with anemia?)

9. The hardest part about nights are: being so tired I cannot stay up any longer, but not being SLEEPY yet

10. Each day I take __ pills & vitamins. (No comments, please) It depends on what my levels are currently.  Usually at least 3.

11. Regarding alternative treatments I: do modify my diet and I have tried "natural supplements" but I am skeptical.

12. If I had to choose between an invisible illness or visible I would choose: visible.  I hate being called lazy.  If people could see my illness, maybe they would be more understanding.

13. Regarding working and career:  I take more sick days than many people.  My bosses in the past have thought that because my anemia is caused by iron deficiency, I can fix that and be cured.  They don't understand that this is a chronic issue for me.

14. People would be surprised to know: inside, I feel like an energetic, fun, very athletic person - trapped in a broken body.

15. The hardest thing to accept about my new reality has been: that sometimes, I just do not have enough energy to do the things I want.

16. Something I never thought I could do with my illness that I did was: run in a 5K with my friends.

17. The commercials about my illness: are depressing and not informative.

18. Something I really miss doing since I was diagnosed is: nothing, really.  I felt sick for a few years before I was diagnosed, so that particular day didn't really change anything at all.

19. It was really hard to have to give up: there's nothing I gave up.

20. A new hobby I have taken up since my diagnosis is:  I have gotten pretty good at doing Anime-style drawings.

21. If I could have one day of feeling normal again I would: spend the whole day doing things, without thinking about taking my iron supplements and without an afternoon rest period.

22. My illness has taught me: to not take simple pleasures for granted.

23. Want to know a secret? One thing people say that gets under my skin is: "My relative/friend/acquaintance had that, and they got better just by eating more meat."  I wish it was that simple, but for some people (read, me) it's not.

24. But I love it when people:  plan things that even tired people can do, and invite me to be a part of it.

25. My favorite motto, scripture, quote that gets me through tough times is: I don't really have anything like this.

26. When someone is diagnosed I’d like to tell them: keep your appointments to monitor your blood.  Take your supplements.  And be honest with your doctors about how tired you really feel.

27. Something that has surprised me about living with an illness is: that I can't just stuff it to the back of my mind.  It seems like it's always there.

28. The nicest thing someone did for me when I wasn’t feeling well was:  my boyfriend brought me soup and a pile of magazines one night when I was too tired to go out with him.

29. I’m involved with Invisible Illness Week because:  I know there are other people with anemia who don't think it really "counts" as an illness.  But it does.  Maybe I can help them get the courage to speak up.

30. The fact that you read this list makes me feel: maybe it is okay for me to share that I just do not feel well

NICIAW - PTSD/Depression

This was submitted by Kay:

1. The illnesses I live with are: PTSD and Depression

2. I was diagnosed with it in the year: 2008

3. But I have had symptoms since: 1974

4. The biggest adjustment I’ve had to make is: realizing I have a disability

5. Most people assume: I am normal with a few quirks

6. The hardest part about mornings are: fighting with a huge amount of anxiety

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: my coffee maker

9. The hardest part about nights are: sleeplessness and anxiety

10. Each day I take 3 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have done massage, reiki, acupuncture, and lots of others

12. If I had to choose between an invisible illness or visible I would choose: visible

13. Regarding working and career: it is very scary to think about it as I am often unable to cope with a regular schedule

14. People would be surprised to know: how hard I have to work to maintain a normal lifestyle

15. The hardest thing to accept about my new reality has been: how much my disability affects every single aspect of my life

16. Something I never thought I could do with my illness that I did was: travel by myself

17. The commercials about my illness: I've never seen one for PTSD

18. Something I really miss doing since I was diagnosed is: living without fear

19. It was really hard to have to give up: living without medications

20. A new hobby I have taken up since my diagnosis is: playing music

21. If I could have one day of feeling normal again I would: I have no idea. I can't imagine what that would be like.

22. My illness has taught me: that I have to take care of myself first

23. Want to know a secret? One thing people say that gets under my skin is: even the tiniest amount of stress

24. But I love it when people: are gentle with one another

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.

26. When someone is diagnosed I’d like to tell them: Hang in there, it can get better.

27. Something that has surprised me about living with an illness is: That others can be so unaware and so cruel sometimes

28. The nicest thing someone did for me when I wasn’t feeling well was: take care of me regardless

29. I’m involved with Invisible Illness Week because: It is so hard to live with an illness that others don't see or know about. Having to try and live a "normal" life when you are really messed up is so difficult and most people have no idea.

30. The fact that you read this list makes me feel: glad to know that you know more about it and maybe will have more compassion for others that you meet with this illness