1. The illness I live with is: Crohn’s Disease.

2. I was diagnosed with it in the year:  1991

3. But I had symptoms since:  1988

4. The biggest adjustment I’ve had to make is:  I’m still making it, I think.  I’ve been off work now for over two years, and we’ve just discovered that I’m most likely going to need further surgery.  I’ve been trying to adjust my disease to my life since my diagnosis — now I’m having to learn to adapt my life.

5. Most people assume: That there’s absolutely nothing wrong with me, or that I exaggerate the impact this has on my life.  Hell, to be honest until the CT scan results last week I was starting to suspect that I might be going mad too, but that turns out not to be the case. 

6. The hardest part about mornings are: Waking up exhausted and then throwing up.

7. My favourite medical TV show is: House?  Seriously though, we don’t have cable/satellite/antenna so TV comes through the Apple TV. We don’t watch very much TV.

8. A gadget I couldn’t live without is:  Surprisingly, I’m not really sure there’s anything I’d put here.  I’m a former tech junkie that has decided that I can live without any of the gadgets in my life — they’re just stuff.

9. The hardest part about nights is: Fighting exhaustion all day to lay in bed and stare at the ceiling while my wife sleeps peacefully beside me coupled wit the constant trips back and forth to the bathroom.

10. Each day I take __ pills & vitamins: I take five and a half pills daily, and every three weeks I get a vitamin B-12 injection.

11. Regarding alternative treatments I: Alternative to what? I’ve come to the following conclusion: if it works, it will happily work during a double-blind study.  Otherwise, sod off and find another rube to sell your magical elixirs to.

12. If I had to choose between an invisible illness or visible I would choose: Invisible, even though it cuts both ways.  In my twenties living in Newfoundland my (Crohn’s related) arthritis was so bad that I walked with a cane for four to six months of the year.  The visibility brought on by my slow pace and the cane brought out the pity-eyes in everyone around me.  Fuck I hated that.  At least when it is invisible I can disguise myself as a normal guy when I feel ok.  The downside is that when you have an invisible illness people think you’re lazy and making it up.  It sucks to be treated that way too.

13. Regarding working and career: Every time I’ve built my life up and starting moving forward my illness has kicked my legs out from under me and dropped me on my ass.  I’m actually terrified right now that I’ve reached the end of the disability insurance period offered at work and that I’m going to have to face going back to work or being fired for not coming to work because I’m sick.  I’m trying to keep some perspective here because I know that this might not be the case and that my brain is filling the voids in my knowledge with fear.  I’m really wondering now if I can even have anything like a regular career or if my disability is honestly such that this won’t be possible.  At thirty-four this is a very daunting prospect.

14. People would be surprised to know: How deep the depression that accompanies this type of illness can be, and just how damn painful this is a good chunk of the time.

15. The hardest thing to accept about my new reality has been: I have so much I want to do, so much I want to accomplish.  So many interests, so many ideas.

Zero energy.

16. Something I never thought I could do with my illness that I did was: Find a wonderful partner who would stick by me and raise a family with me.

17. The commercials about my illness: Try very hard, but end up making my nightmare sound like a moderate inconvenience.  When you see them at all.

18. Something I really miss doing since I was diagnosed is:  I was diagnosed so long ago that I really can’t answer that.  At this point in my life, I’ve had Crohn’s for twenty-some more years than I didn’t.

19. It was really hard to have to give up: In this go-round, the hardest part has been accepting that I have had to abdicate many of my responsibilities around the house.  S, my partner, has carried us through the past few years.

20. A new hobby I have taken up since my diagnosis is: I’ve taken up writing, although not in a public fashion until a few days ago.  It really helps process, and I’ve got tons of stuff to process.

21. If I could have one day of feeling normal again I would: I do get them occasionally.  They feel strange when they come, and they get used to go to work, do stuff around the house, just pick up the plates that stopped spinning and dropped while I wasn’t feeling “normal”.

22. My illness has taught me: Some people are amazingly selfless, others are amazingly selfish.  Sadly it seems to be more the latter, but we have to remember I used to be a big-box retail manager.

23. Want to know a secret? One thing people say that gets under my skin is:  “Have you tried this [diet/magic potion/sleeping position/religious ceremony]?”

I know you’re trying to help, but seriously, do you think I don’t keep my ear to the ground for new developments?  Do you realize that you actually have no idea what you’re talking about?  I’ll try to be polite, but please see what I said above about double-blind studies.  What happened to you that you lost your trust in the system to the point that you think the doctors are trying to poison you for profit? I’ll reign this in here, but I feel sometimes like I get a front row seat to my family/friends/acquaintances losing their faith in our social institutions in that everyone seems to feel comfortable talking to me about weird health conspiracy stuff.  You’d be amazed what otherwise normal people believe about bowel diseases.

24. But I love it when people: I love it when people remember that I’m still here, that I’m not just a walking collection of symptoms and suffering. The feeling of being lost under/behind your disease doesn’t help the depression, especially when you’ve got an invisible disease and people blame your personal integrity for not meeting their expectations.

25. My favorite motto, scripture, quote that gets me through tough times is: Dum spiro spero. — latin meaning “As long as I breathe, I hope.”

26. When someone is diagnosed I’d like to tell them:  Read.  Understand your disease.  If you don’t trust your doctor, if you can’t be fully 100% honest with your GP and your GI fire them and find another.  Your health and your life will depend on these relationships, so find ones that work and maintain them.  You need to understand what’s going on with your health and you need to direct your care, because if you don’t there won’t be anyone at the helm.  Nobody wants their medical care to be like a rudderless ship.

27. Something that has surprised me about living with an illness is: How easy it is to keep going most of the time.  Don’t get me wrong, there are some very, very hard and dark times.  Most of the time though, I just keep my head down and try to put one foot in front of the other.

28. The nicest thing someone did for me when I wasn’t feeling well was:  There are so many things here I couldn’t possibly list them.  Let’s just say that part of having this type of illness is that you know who your real friends are, and just how much you’re loved.  It can be very humbling.

29. I’m involved with Invisible Illness Week because: I kind of wasn’t, and I really don’t know much about it so I can’t vouch for the site.  I will tell you that I think this is a good idea even though I’m afraid that we’re all suffering a bit from cause-du-jour fatigue.  I’m answering these questions because I think that they’ll be insightful for both myself and people who know me who would like to understand better.

30. The fact that you read this list makes me feel: No offense, but who really cares how I feel? I’m thrilled you felt this was worth reading, but you shouldn’t assign value to my writing based on how that would make me feel.  Enough of this everybody gets a badge bullshit please.  We’re grown-ups around here, and I know you have no idea what’s going on either, but for Christ’s sake pull yourself together and pretend.  Think of your grandparents.  Act like that.