National Invisible Chronic Illness Awareness Week

[deborahjross]

quietspaces posted this, and I thought I'd see how it maps out for me.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: PTSD (Post Traumatic Stress Disorder).

2. I was diagnosed with it in the year: The trauma was the rape and murder of my mother in 1986, followed by the sentencing and successive parole hearings of the perpetrator; my current understanding is that these not only reinforced the initial trauma, but were actually new incidents.

3. But I had symptoms since: I had previous problems with anxiety from having been sexually molested as an adolescent, and also growing up in a family that was the target of a McCarthy witch hunt during the 1950s. With this history, confronting my mother's rapist in court was particularly difficult.

4. The biggest adjustment I have had to make is: cutting myself some slack when I get triggered. Just because I can pretend I'm okay doesn't mean I am.

5. Most Some people assume: I support the death penalty because of what I've been through; the truth is just the opposite, that the value I place on human life has been one of my strengths in recovery.

6. The hardest part about mornings are: time of day isn't a factor, but season is. The hardest time of year is now, as the anniversary approaches.

7. My favorite medical TV show is: I don't watch TV; there's far too much casual violence.

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

9. The hardest part about nights are: cycles of not being able to fall asleep unless I drug myself; thanks to therapy, I don't have nightmares or waking hallucinations about the murder any more.

10. Each day I take: At different times over the last 20 years, I have needed antidepressants, anti-anxiety meds, sleep meds; I have also gone through times when I did not need any of them; currently, because last year was a parole-hearing year and I'm still recovering, I take a small amount of anti-anxiety med at bedtime.

11. Regarding alternative treatments I: have gotten benefit from things like meditation, massage/bodywork and yoga, but none at all from herbs, homeopathics, or acupuncture. I have a wonderful therapist who uses EMDR, which I have found helpful. The mainstay of my recovery is a 12-Step program.

12. If I had to choose between an invisible illness or visible I would choose: I have no idea. I would never choose what happened, or wish it on anyone else.

13. Regarding working and career: I can do the work I love, I can use the pain and anger to deepen my writing; in my day job, however, I do better if none of my co-workers (except my boss) know what happened.

14. People would be surprised to know: one of the most helpful things to say is, "I can't know what you're going through, but my heart goes out to you."

15. The hardest thing to accept about my new reality has been: accepting that my life will never be the same. The murder is no longer the defining incident in my life, but I can never be the person I was before it happened. I'm someone different.

16. Something I never thought I could do with my illness that I did was: to pray for the man who did it.

17. The commercials about my illness: Ha! There's no money to be made in treating it, so no commercials.

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

19. It was really hard to have to give up: n/a

21. If I could have one day of feeling normal again I would: n/a -- I feel "different normal" most of the time.

22. My illness has taught me: not to wait to say, "I love you;" that even though I am strong, I can break; how important it is to ask for help; how precious my friends are.

23. Want to know a secret? One thing people say that gets under my skin is: this is tricky to say, but when I tell someone, they're hearing it for the first time, so their emotional reactions are raw and strong. Their own personal issues sometimes get triggered. On the other hand, I've had over 2 decades, most of them in recovery, to work my way through. So I end up taking care of the other person through that initial shock; I've learned to be mindful of my own emotional resources before mentioning it.

24. But I love it when people: listen to where I am instead of projecting their own emotions on me.

25. My favorite motto, scripture, quote that gets me through tough times is: Just breathe, one breath at a time.

26. When someone is diagnosed I’d like to tell them: "This is really hard stuff. You don't have to walk through it alone."

27. Something that has surprised me about living with an illness is: how far I've come in 20+ years.

28. The nicest thing someone did for me when I wasn’t feeling well was: when I was lost and in hysterical tears, a friend found me and took me home with her so I could be in a safe place.

29. I’m involved with Invisible Illness Week because: I thought I might learn, and share, something about PTSD.

30. The fact that you read this list makes me feel: hopeful that we can learn more about how to help people who have it. We have a lot of theories, but very little research-based information on how to treat it. Now we have a whole population, returning vets, suffering from PTSD.

Comments

[asakiyume.livejournal.com]

This makes me very sad for you--very very sad. It's exactly as you say in your answer to no. 23, very new for me, as a reader of your blog, but something you've had to live with all these years... *your* tragedy and horror, but very, very affecting when you tell it...

Does thinking about things act as a trigger? What I mean is, do you try to avoid thinking about certain things?

[deborahjross.livejournal.com]

[[hugs]] back. Thank you for your care.

At first, my days were riddled with obsessive thoughts, and I had no idea how not to give in to them, or even that I should resist. Gradually, I learned there were some places in my mind that weren't safe to go; at first, I had no control -- a thought would seize me, and off I'd go into FranticHatredLand. Then I became aware of choices, tools to use. (I used to think slogans like, "One Day at a Time," "Easy Does It," or "How Important Is It?" were the most lame-brained nonsense, but they're easy to grab hold of in a pinch!)

Now, I can let my mind be my friend. If something comes up, I can look at it and decide whether it's something that has arisen to be healed or old stuff echoing because I'm otherwise stressed or off-balance. Most of the time, I can set things aside. If they come back, that usually means something's going on that needs attention.

At this point, I have more trouble with seasonal rhythms than specific thoughts. And going to the prison where the perpetrator is housed for a parole hearing is definitely re-traumatizing. I try to steer clear of media (especially visual like film or video) that trivializes violence, but I'm not hypersensitive -- I can enjoy LotR or Buffy or Harry Potter, but I don't watch things like war movies or police shoot'em'ups. Or horror -- I read almost none of that, as well.

[asakiyume.livejournal.com]

*nods*

I think I understand... in my own situation, my need to learn has been less dire, but I too used to be the prisoner of my own thoughts, if they'd take me someplace, whereas now, I can see something's coming up as something that wants me to obsess about it, and I can walk away.(I hope that statement of my own process doesn't sound trivializing: I don't mean it to be, not at all. It's not even comparable to what you [have to] do; it's just an explanation of how come I think--think--I can understand what you're saying...)

[deborahjross.livejournal.com]

Hooray for you for being able to walk away! That's an amazing achievement!

I think we all wrestle with having our minds -- thoughts/brain biochemistry -- hijinked, whether by our own hot issues or flavor enhancers in food or the barrage of advertising or whatever. It's one thing to know that chewing over an insolvable problem in the isolation of our own skulls isn't going to do anything but make us miserable, and quite another to have some choice in the matter.

The food analogy is helpful to me -- some thoughts and memories have that same quicksand quality. Our brains are hard-wired to Pay Attention!!, our adrenal glands go into overload, and it's like a junkie's fix. Without the high.

[http://users.livejournal.com/la_marquise_de_/]

Thank you: you are extraordinary and rather wonderful.

[deborahjross.livejournal.com]

Most of the time, I don't see myself as special, just an ordinary person faced with extraordinary challenges. Then I realize that we are all heroic, wise, compassionate, steadfast. I like living from that perspective. Among other things, it means that whenever I encounter another person, I have the opportunity to experience something wonderful in them.

[the-resa.livejournal.com]

I just want to say how brave I think you are to have posted this. And how truly horrible this is. I am so sorry.

My heart and best wishes go out to you.

[deborahjross.livejournal.com]

Thank you.

In the early years, I needed to talk about it a lot. Then came a phase when talking made it worse, as if I were digging an even deeper groove by going over the memories. Now there's a balance, and I have enough recovery so that the service of bringing such things out into the open not only helps me, but I am helped by the connections with others.

[missingkitsune.livejournal.com]

brave, brave lady. *hugs*

[deborahjross.livejournal.com]

A saying that really connected with me is: "Courage is fear that has said its prayers."

The hardest thing I've ever done was go to San Quentin for the first parole hearing. I hadn't had any contact with the perpetrator in over 7 years, and San Quentin is a very Not-Nice place at the best of times. I was so scared and angry and upset I was on the verge of throwing up the whole time. But I did it anyway because of how strongly I believed it was important for me to speak out on record against his release.

I studied Chinese martial arts for about 30 years, and learned a few things about pain. Sometimes pain means an injury that requires care, and it's best to stop; but more often, pain is just pain, and you choose how much power you give it. Fear's the same way. Some terror is overwhelming -- we all have limits -- but there's a gray area where we do have choices. We make that gray area broader when we "say our prayers," whatever that means to us.

[missingkitsune.livejournal.com]

gosh that makes you even braver in my books. i don't believe i'd be able to face the person who did something like that.

[deborahjross.livejournal.com]

I hope so much that you never find out!

I think we all have wellsprings of courage within us (as well as compassion and kindness and many other things). We can't know until we face the fire.

At a panel (at NASFic, maybe 20 years ago), at a panel on "Women Warriors," a heckler demanded to know if any of we "ladies" had ever been in a "real, life-threatening situation." Without missing a beat, Alis Rasmussen answered, yes, when she'd gone into premature labor with twins.

Needless to say, every women in the room and almost every man (except the heckler) got it.

[sourceoftrouble.livejournal.com]

I'm here via Controuble.

Thank you for number 14. That helps me, and others I'm sure, to have some idea of what to say. Frequently nothing is said, or 'wrong' things are said out of ignorance.

[deborahjross.livejournal.com]

Hello, good to see you. Thanks for this comment. You are so right -- when someone we love, or even someone we just met -- have been affected by violence (or other strong negative experiences), we so badly want to help, to connect. I think I'll do a separate post of suggestions and reflections on my own experiences.

[imhilien.livejournal.com]

I'm sorry to hear that... *gentle hug*

[deborahjross.livejournal.com]

[[hug]] back.

Hugs are so important. "I'm here, I care, you're not alone."