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

[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.