Living with chronic illness, sometimes you just want to
write or post anything related to your conditions.
For me personally, I do it because I want to raise awareness
about the disease as well as try to catch up with other survivors in town. I
also want to share what I feel and what I’ve been through during my ups and
downs. As a ‘survivor’, it’s a huge relief for me to read and know that there
are plenty of people out there (esp. here in Indonesia) who feel the way I feel
and experienced similar problem with me.
It is not easy every time someone asked me “are you sick?
What kind of sick do you have?” or “what do you feel about your sick? What is
it once again? I don’t understand” because most of the time they don’t
understand and I have to explain it from the very beginning and then they said
“oh..ok..”. So, to keep it short, I usually simplified this disease and make it
easier to hear for them.
Fortunately, I found a
website where people with autoimmune
disease write about their illness by answering 30 simple questions. I tried to
answer these questions and hopefully I could explain my condition to everyone
as well as understand myself in a better way.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Behcet’s Syndrome, IBD, and early
stage of Myasthenia Gravis
2. I was diagnosed with it in the year: 2014
3. But I had symptoms since: 2000 (it’s been 15 years…)
4. The biggest adjustment I’ve had to make is: my activities! I can’t even clean
my bedroom, not being able to eat my fave food and snacks, do some outdoor activities
(esp. under the sun) and physical sports.
5. Most people assume: I exaggerate my pain because I don’t look sick during
the day. In fact, I hide my pain pretty well and managed to get to work no
matter how bad it hurts.
6. The hardest part about mornings are: the morning itself! I do hate my
morning because I lost 60% of my energy and I feel extremely helpless. I had a
very bad migraine, axis and muscle is really painful most of the time.
7. My favorite medical TV show is: none actually but I enjoy dr Oz and Grey’s
Anatomy sometimes.
8. A gadget I couldn’t live without is: iPhone.
9. The hardest part about nights are: Massive headache, migraine, suffocation,
insomnia, and spasticity.
10. Each day I take 13 pills & vitamins.
11. Regarding alternative treatments I: drink lemon water every day although I don’t
really know the benefit of this treatment, I just like the taste. It reminds me
of my soda :p
12. If I had to choose between an invisible illness or visible I would choose:
none of those of course. But if I had to I would choose invisible because I will
get less “pity look” than the visible one.
13. Regarding working and career: I love my job, my career, and my current
workplace but this disease gives limitation to my performance. I consider to
change my dream..
14. People would be surprised to know: I have the most supportive husband who
taking care of me during my hard time accepting the illness.
15. The hardest thing to accept about my new reality has been: my body’s bad
response to monosodium glutamate, heat, constantly tired and the fact that I couldn’t do what I
would like to do no matter how bad I want it or how strong I think because
thinking strong isn’t enough.
16. Something I never thought I could do with my illness that I did was: take
my daily meds, love to take blood regularly, and feel that hospital is my
second home. It’s scary sometimes to feel that I miss being at hospital.
17. The commercials about my illness: is not common even for other autoimmune
patients
18. Something I really miss doing since I was diagnosed is: driving, running
(and other sports activities), and eating Indomie as much as I can anytime I
want.
19. It was really hard to have to give up: Indomie and processed food and
Sambal!!
20. A new hobby I have taken up since my diagnosis is: being actively in social
forum and googling about my illness.
21. If I could have one day of feeling normal again I would: jump around,
running as fast as I can, and throw away my pills.
22. My illness has taught me: being healthy is the greatest blessing from God.
23. Want to know a secret? One thing people say that gets under my skin is: “Oh,
I feel that too sometimes, take it easy”, “what’s the effect of your disease? It’s
not that bad, right?”, and “get well soon” – can I just slap your mouth?
24. But I love it when people: don’t judge and give me a confused-underestimate
look and say “I know you are strong!” or “just believe and keep on believing
that when God says heal and you’ll be healed”.
25. My favorite motto, scripture, quote that gets me through tough times is: “Just
keep swimming” – Dory on Finding Nemo film.
26. When someone is diagnosed I’d like to tell them: Stay strong, don’t panic
and you’ll get through this as long as you believe in yourself.
27. Something that has surprised me about living with an illness is: able to
know how many friends and family that really care for me and realize that I
could be “this” strong.
28. The nicest thing someone did for me when I wasn’t feeling well was: hug me
and say just keep on believing that everything will be ok and you have a very
bright future waiting for you. Luckily this someone is le husband :)
29. I’m involved with
Invisible Illness Week because: I want to
raise awareness about this in my country or at least in my society.
30. The fact that you read this list makes me feel: valued and I feel that you
do care! Thank You!!
xx
NS
