Invisible Illness Awareness Week

Post by Isabella-

There is apparently an online advocacy thing going on about "Invisible Illness Awareness." It is to raise awareness about mental health disorders and other "invisible" illnesses. I think this is pretty neat. They have a survey that people can take online so here is mine:

1. The illness I live with is:

PTSD and depression.

2. I was diagnosed with it in the year:

2011

3. But I had symptoms since:

Depression: At least since a friend in high school started talking about killing herself. I ended up turning her in because I was worried. The loss of that relationship afterward caused me to kind of start spiraling downward. But the depression would come and go. PTSD: I noticed early January of 2010.

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

Dealing with the nightmares and panic attacks. Also, having to sensor myself with what I watch/read/listen to when I never had to do so before. 

5. Most people assume:

That the nightmares should be easier to deal with than how I handle them.

6. The hardest part about mornings are:

Remembering the nightmares and trying to ground myself. It can take anywhere from 20 minutes to several hours for me to feel safe enough to get out of bed.

7. My favourite medical TV show is:

I don't have one.

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

Phone.

9. The hardest part about nights are:

Falling asleep and the nightmares. I wake up anywhere from 2 to 10 times a night from nightmares. Then I start the process of grounding myself so I can be calm enough to go back to bed.

10.  Each day I take __ pills & vitamins.

No pills or vitamins. I take Tylenol PM or benedryl whenever I have a really hard time going to bed.

11.  Regarding alternative treatments I:

I don’t think I use any? I guess "grounding" could count?

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

I don't know. I know the arguments for invisible: you're able to tell someone about it or choose to hide it, people don't have to know what you're going through...etc. I kind of prefer visible because I wouldn't  have to explain or deal with people who don't really understand (or want to understand). 

13.  Regarding working and career:

I worked for two weeks this summer before I had issues with panic attacks brought on by triggers at work. I have been home for the summer preparing to go back to school this fall.

14.  People would be surprised to know:

How rough it can get for me. I just don't think anyone understands or wants to understand.

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

The fact that my sense of safety is gone. I will never feel content or safe anywhere. I will always be on my guard. I will always put my keys in between my fingers when I'm walking alone. I will never sit with my back to the door and feel safe. I will always make plans in my head for escape routes when I walk in a new building just in case.

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

Be comfortable around boys again.

17.  The commercials about my illness:

The ones for depression are pretty obvious. There are online ones for PTSD, but they're all about military men and women which is a little frustrating. They aren't the only ones who deal with this issue.

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

Well, since this whole thing started: sleeping through the night.

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

The typical giving up a good night of sleep...etc. But something that was difficult to pick up was "grounding." It just seemed really silly and that made it hard to do.

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

Going over my nightmares during the daylight hours and trying to analyze them. It's helped me realize what my mind is trying to tell me while I'm asleep, but it's difficult.

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

I don’t remember what normal is, but I would probably hang out with friends, watch all the things that I avoid and then go to bed really early so I could sleep well for a while.

22.  My illness has taught me:

People are horrible, sick, twisted individuals who do the absolute worst things to each other. People can do crap like that and get away with it. I can fake a good day. I can let myself wallow on a really bad day.

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

"I'm sorry." "Tell me where he lives. I'm going to kick his a**." "You'll be okay." Or if they just give me a pitying look.

24.  But I love it when people:

Treat me normally.

Are just there for me.

Cuddle.  (Physical contact helps my dissociation more than anything else.)

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

A quote from Firefly:

-“Well, we’re still flying.”

-“That’s not much.”

-“It’s enough.”

I also like this quote from “Concrete Angel”: “Through the wind and the rain, she stands hard as a stone.”

**These were not mine originally, but reading them from another person with depression and PTSD was really uplifting. I love it.

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

It's really hard, but I'm here for you. I understand what you're going through and whatever you need from me, you got it.

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

How strong certain things can hit. Like a post I made a while back about my mom and I.

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

Sat up with me on the phone when I just woke up from a nightmare.

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

I had no idea what that is.  I just saw this under the PTSD tag on Tumblr. Then I did some research and fell in love with this idea. So many people don't understand  how big of an issue this actually is, don't understand how much people suffer every single day.

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

Surprised, cared for, happy.

I know that's a lot of stuff, but it felt really good to get all of it out. I also really hope that IIA Week can go well and people can become more informed about mental health and mental health issues along with other "invisible" illnesses.

"If you are in pain, you are not alone."