Friday, September 18, 2009

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: bipolar1, bulimia nervosa, COE

2. I was diagnosed with it in the year:1998

3. But I had symptoms since:1992-4 from memory

4. The biggest adjustment I’ve had to make is: learning to manage my moods in a way that i am able to do things that i want to, determining what normal functional eating is.

5. Most people assume: that people with bipolar spend alot of time in hospital, are non-compliant, are unable to work full time or study. Most people assume people with bulimia are under psychiatric care when it is actually extremely difficult to access, regardless of insurance. I've pretty much tried all treatment that is available...clinics, group therapy, meds, OA etc etc. Stats on the success of treatments are generally pretty woeful actually.

6. The hardest part about mornings are: Getting up as I often sleep poorly due to early waking syndrome.

7. My favorite medical TV show is: Doc Martin

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

9. The hardest part about nights are: restless leg syndrome, early waking insomnia

10. Each day I take 6 pills & vitamins.

11. Regarding alternative treatments I'm a big fan yet i get aliented by those who are anti-psychiatry and at people who assume bipolar can be treated without medication. I currently see a hypnotherapist for help with my eating (which is no where near as severe as it was in its hey day I hasten to add). I also find exercise helpful.

12. If I had to choose between an invisible illness or visible I would choose: not sure really, maybe something more visible would make me feel less guilty. Bulimia is very much an invisible illness, until I visit the dentist that is :).

13. Regarding working and career: both are extremely important to my wellness.

14. People would be surprised to know: I still am unable to predict the onset of depression despite my best efforts! Lots of fat people have eating disorders, it's not simply a case of eating the wrong foods all the time. I've met many women in their 60's who still have eating disorders, sadly.

15. The hardest thing to accept about my new reality has been: Letting people down when I am unable to commit to plans I have made in the past. Letting myself down.

16. Something I never thought I could do with my illness that I did was: work as a volunteer feminist phone counsellor, it was a huge part of my recovery.

17. The commercials about my illness: I haven't seen any actually.

18. Something I really miss doing since I was diagnosed is: I miss having a reliable sex drive actually.

19. It was really hard to have to give up: the rush of manic highs, being thin....I have an underactive thyroid due to medication side effects.

20. A new hobby I have taken up since my diagnosis is: crafting! Now I have my own small business Polka Dot Rabbit

21. If I could have one day of feeling normal again I would: I think I feel relatively normal, whatever that us.

22. My illness has taught me: we can choose to live our lives the best way we can, despite mental illness. My twin committed suicide due to mental illness and it's taught me that all we can do is find the joy or purpose we can with each day. Focusing on helping others, volunteering etc are always great recovery tools.

23. Want to know a secret? One thing people say that gets under my skin is: But you do so much!

24. But I love it when people: encourage me to socialise.

25. My favorite motto, scripture, quote that gets me through tough times is: not sure but I find Kay Jamieson Redfield inspiring.

26. When someone is diagnosed I’d like to tell them: You can learn so much to make things easier.

27. Something that has surprised me about living with an illness is: Just the ways the illness have changed over time. I am now much less manic but still susceptible to severe depression. I still struggle with bulimia/ED despite many treatment programs. I'm also surprised at the lack of materials for partners of those with eating disorders, it all targets parentals.

28. The nicest thing someone did for me when I wasn’t feeling well was: my husband makes me laugh which is lovely.

29. I’m involved with Invisible Illness Week because: we exist and live meaningful lives

30. The fact that you read this list makes me feel: incredibly vulnerable as though I will be constantly seen through an ED/psychiatric lens.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at


willywagtail said...

Writing this list helps us to understand your illness better. I suffer from severe depresion and anxiety but for me that does not actually mean that I am down all the time but rather that my body is. I have great friends and that is a big help but I agree that visible illnesses are easier for uncaring/uninformed people to cope with. Always remember that when someone doesn't understand you can be happy for them because they have never had to suffer your problems and no doubt you would not wish them on others. This idea helped me to cope through a terrible marriage breakup where people thought they had to take sides. All the best. Cherrie

Leonie Guld said...

Be proud...This post was brilliant.....I am sure bloody hard to write....just Brilliant!!!

Anonymous said...

I have been following your blog for some time now, and am sorry to learn of your invisible illness. I also feel guilt for my invisible illness, and am supporting the conference. Well done with all your achievements - and don't let the bastards drag you down! Shelly

Natalie said...

I think this invisible illness survey has been amazing - I have learnt so much about my friends! I don't really think my view of you as a crafty, intelligent woman will really shift either... :D

Anonymous said...

*hugs* Thanks for sharing.

I hate taking so many pills in the morning too. I really panic about lunch time thinking... Did I take my St John's Wort??? I'm manic without it.

Cathy (tinniegirl) said...

I think you are very brave and I admire you for it. Thanks.

midge said...

thank you so much for sharing this amazing and informative information. it is a brave move to use this forum to expose such intimate details about your battle and i applaud you for it. this post will have touched everyone who reads it and they will each take a message with them that will alter the way they see invisible illness's and that can only be good

Anonymous said...

I just read this and I think it is an amazing post - good on you for making yourself vunerable just to help educate others - and it makes me respect you as a stronger person not in a negative way whatsoever. Well done!