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.