Invisible Illness Week: 30 Things

This Is Invisible Illness Looks Like

30 Things About My Invisible Illness You May Not Know


1. The illnesses I live with are: Ehler’s Danlos Syndrome, Osteoarthritis, Degenerative Disc Disease, Neuropathy, Bipolar Disorder, OCD, General Anxiety Disorder, Agoraphobia, PTSD (and several others)


2. I was diagnosed with it in the year: I was diagnosed with bipolar in 1988, with EDS 2001. My physical issues surrounded the EDS diagnosis that is genetic. The other psychological illnesses surround the Bipolar.

3. But I had symptoms since: Childhood. This, I have realized only in retrospect.

4. The biggest adjustment I’ve had to make is: the slowness of my life, the loss of my job, the alienation: those that once had my back now stay far in my rearview mirror

5. Most people assume: I am overreacting, a “drama queen”, and that I make it all “about me”

6. The hardest part about mornings are: needing to get up to take care of my dogs regardless of how I feel, taking a ton of medications, unpredictability of my symptoms

7. My favorite medical TV show is: currently there aren’t any decent medical shows on television. I like “Compilations” but not for the medical aspect. Soon “Code Black” will be on. I look forward to seeing it

8. A gadget I couldn’t live without is: my iPhone, my UP Move

9. The hardest part about nights are: sleeping through the night, in general, or without pain, my night terrors, and sleepwalking

10. Each day I take 19 pills & vitamins

11. Regarding alternative treatments I: believe acupuncture helps, massage hurts, TENS helps, magnesium helps, chiropractors are dangerous (especially for EDS patients)

12. If I had to choose between an invisible illness or visible I would choose: Neither, of course, I believe we both live with major drawbacks. I certainly would not ask someone with a visible illness the same question

13. Regarding working and career: I lost my fifteen-year career to my illness. I was the VP of a software company. My career was my life. It wasn’t only having an illness; I could not get a diagnosis, and I handled that poorly. Before my diagnosis, I could not get proper treatment. Lack of proper treatment caused greater pain and fatigue. My production fell dramatically. So, regarding work and career: damn this illness and what it did to all that I worked so hard for.

14. People would be surprised to know: how hard I try. How much I can do if you give me the opportunity

15. The hardest thing to accept about my new reality has been: It doesn’t matter how hard I try, no one sees it. I feel like I am whistling in the dark.

16. Something I never thought I could do with my illness that I did was: start #ChronicallyAwesome and get relentlessly excited about something again

17. The commercials about my illness: There are no commercials about EDS. Many about depression and mental illness that bring awareness and I hope help to reduce stigma. As an activist, I scrutinize every commercial and find them too focused on the negative symptoms

18. Something I really miss doing since I was diagnosed is: being unconditionally loved. It is hard for people to understand the ebb and flow of illness. If a part of me doesn’t work right now, it will come back. And, yes, I know when you have given up on me.

19. It was really hard to have to give up: working, my career, knowing I will have the kind of love I deserve

20. A new hobby I have taken up since my diagnosis is: I don’t know if you would call it a hobby, but supporting my community. Also, I enjoy cooking and reading.

21. If I could have one day of feeling normal again I would: for only one day I would do the same as I do any day. One day is not much. I can manage a day, or even four enjoyable straight days at Disneyland feeling the way that I do, so one day won’t help me.

22. My illness has taught me: I can do all of the things that anyone can do right here from a chair or a bed. I am not LESS THAN. I am not my diagnosis. My life may be different, but it is full. I am strong. I am awesome.

23. Want to know a secret? One thing people say that gets under my skin is: “If you just didn’t talk about it so much, or think about it, things would be better.”

24. But I love it when people: Treat me like they treat anyone else
My Invisible Fight

25. My favorite motto, scripture, quote that gets me through tough times is: “We are given two hands, one to help ourselves, and one to help others”

26. When someone is diagnosed I’d like to tell them: This is not the end of the road, this is only the beginning of a new, unexpected road.

27. Something that has surprised me about living with an illness is: Illness is unpredictable. You can fabulous one or more days, the next day one can feel terrible.

28. The nicest thing someone did for me when I wasn’t feeling well was: took me in, took care of me, changed my life for the better. Taught me to be a woman instead of a girl. It worked. Thank you.

29. I’m involved with Invisible Illness Week because: I will give you an example. Often, those of us with Invisible Illnesses that also have handicap placards for parking are the victims of prejudice. Notes are left on our cars calling us liars. People yell at us in parking lots. If the world at large were more aware of what Invisible Illnesses are, this and other prejudices would no longer occur.
It is my hope that with my involvement, even those of us whose families call us fakers and drama queens will gain more understanding. Those of us left on the sidelines will be included and those of us that just can’t make it that day will be understood.

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

And why the tulips? They are my favorite.