30 Things About My Invisible Illness You May Not Know

Edited on 2009-09-17 to add to the 13th question.

1. The illness I live with is:
There are several, but let’s select the three that affect my life the most: my congenital cerebral palsy, my hearing problem (a sharp drop in my right ear’s ability around the frequencies commonly used in consonants), and my paroxysmal atrial fibrillation.

2. I was diagnosed with it in the year:
The CP was diagnosed some time very early in my life; not at birth, but not many years afterward. I’m sure my parents can give a better estimate in the comments. The hearing problem was diagnosed when I was 16 or so. The afib was diagnosed in the emergency room in January 2008.

3. But I had symptoms since:
The CP is a neurological injury that probably happened during my birth. I’ve had its symptoms ever since. The hearing problem was diagnosed soon after the symptoms were noticed. The afib was diagnosed less than one hour after first onset of symptoms.

4. The biggest adjustment I’ve had to make is:
I always try to position myself so that other people that I expect to converse with are not on my right, since – especially in situations with lots of background noise – I tend to have trouble understanding speech that I hear through my right ear. Sometimes this is a tradeoff, with some people on my right whatever I do.

5. Most people assume:
That my problems in moving around are due to my obesity. Granted, it doesn’t help, but a lot comes from the CP.

6. The hardest part about mornings are:
Nothing relevant to these medical conditions.

7. My favorite medical TV show is:
There isn’t one. They all make me panic.

8. A gadget I couldn’t live without is:
Nothing relevant to these medical conditions.

9. The hardest part about nights are:
Settling down on the bed, feeling relaxation coming and then having the heart freak itself out in an afib episode. Or going to bed a bit too late, falling asleep, and then waking up to a freaked-out heart which then keeps me awake until dawn. Mind, these don’t happen that often – the usual is about three weeks between normal episodes and a couple of months between the “awakens me” ones.

10. Each day I take __ pills & vitamins.
Two – bisoprolol 5 mg and flecainide 100 mg. The flecainide is a new medication for me and hopefully helps me with the previous question.

11. Regarding alternative treatments I:
I doubt them. (I was going to write that I’m skeptical, but that has special connotations in this context.)

12. If I had to choose between an invisible illness or visible I would choose:
To kill the person making me make that choice. Well, at least curse them.

13. Regarding working and career:
I can’t play music well enough due to the CP, though I was enthusiastic in my teens. It was hopeless for me to even try sports for the same reason. I was disqualified from serving in the peacetime military (which is normally compulsory for men in Finland) due to the CP; the hearing problem alone would have given me a reduced fitness rating. Fortunately, none of these affect my current profession.

14. People would be surprised to know:
That I have CP. Mine is mild enough that only experts can tell without me cluing them in. Also, I suppose people would be surprised to know that the afib is not life-threatening (since anything involving the heart is scary, right?).

15. The hardest thing to accept about my new reality has been:
That I do need the scary medicine I was recommended (namely, flecainide).

16. Something I never thought I could do with my illness that I did was:
Can’t think of anything.

17. The commercials about my illness:
There aren’t any.

18. Something I really miss doing since I was diagnosed is:
Nothing.

19. It was really hard to have to give up:
Nothing.

20. A new hobby I have taken up since my diagnosis is:
Nothing.

21. If I could have one day of feeling normal again I would:
“Normal is what everyone else is and you are not.” An unforgettable quote from a forgettable movie, and quite right. I’ve never been, and I never will be, normal. I have no desire to be normal.

22. My illness has taught me:
That not all heart problems are life-threatening.

23. Want to know a secret? One thing people say that gets under my skin is:
“CP”. At one time, it was a contentless hate word.

24. But I love it when people:
Nothing specific to these medical conditions.

25. My favorite motto, scripture, quote that gets me through tough times is:
Nothing specific to these medical conditions.

26. When someone is diagnosed I’d like to tell them:
It isn’t the end of the world.

27. Something that has surprised me about living with an illness is:
Can’t think of a thing.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Reassure me that I wasn’t going to die. That was about two hours after I had been admitted to the emergency room due to my first afib episode.

29. I’m involved with Invisible Illness Week because:
I’m not. I’m doing this because I feel like it and because someone pointed me to another poster who had participated.

30. The fact that you read this list makes me feel:
Intrigued. Why did you?

One thought on “30 Things About My Invisible Illness You May Not Know”

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>