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Invisible Illness Awareness Week

13/09/2010

Invisible Illness Week is September 13-19.  So many people suffer from invisible and often chronic illnesses that you may never know unless they tell you.  Thank you to Courtney Runs for bringing this to my attention.  Use this week to reach out to someone you know with a chronic condition…don’t just stop at this week though, we can use support all the time.

Here are “30 Things About My Invisible Illness” presented by National Invisible Chronic Illness Awareness Week. :)

I have several invisible illnesses including Bipolar Disorder, Anxiety, Vitamin D Deficiency and severe Irritable Bowel Syndrome.  For the purposes of this list I’m using Bipolar Disorder.

  1. The illness I live with is: Bipolar Disorder
  2. I was diagnosed with it in the year: 1998
  3. But I’ve had symptoms since: Hyperactivity and mood swings through out childhood.  Depression set in at age 14.
  4. The biggest adjustment I’ve had to make is: My schedule has to be precise.  I need to be able to take my pills and get in good sleep and exercise.
  5. Most people assume: I don’t even have it.  I’m stable now so you wouldn’t know to look at me.  In the past most people thought I was overdramatic and trying to get attention.
  6. The hardest part about mornings are: Getting over the sleep medication fog.  I can’t wake up too early or I feel hung over.
  7. My favorite medical TV show is: Mystery Diagnosis.  I always knew something was off but never really knew what until the depression hit.
  8. A gadget I couldn’t live without is: My cell phone.  I have my medication reminders in it as well as multiple alarms for doctors appointments and times to get up 🙂
  9. The hardest part about nights are: Not being tired but knowing I have to go to sleep.  The insomnia can be pretty bad some days and staring at the clock is annoying.
  10. Each day I take 16-20 pills & vitamins.
  11. Regarding alternative treatments I: Use a lot of them.  Exercise is a part of my regular routine.  I don’t drink.  I’m on a schedule.  And many many more.  I don’t use alternative medicines though.
  12. If I had to choose between an invisible illness or visible I would choose: Invisible.  I can pretend I don’t have it when I feel good and am stable.  I don’t have the constant reminder of my illness except for the pills I take daily.
  13. Regarding work: I can handle regular days but when my schedule gets really busy I tend to stress more which aggravates my symptoms.
  14. People would be surprised to know: That I had to leave college for a semester to get my symptoms under control.  It was all too much to handle.
  15. The hardest thing to accept about my new reality has been: Having it affect my decision about children.  I decided to adopt to prevent passing it to one or all of my children and exacerbating my symptoms while off the medications to be pregnant.
  16. Something I never thought I could do with my illness that I did was: Swallow pills without water.  Not all of them at once but if I need to I can take them dry without gagging.  Skills I know. 🙂
  17. The commercials about my illness: Don’t tell the whole story.  Bipolar disorder isn’t just the depression.  It can be extreme mania and a scary mixed combination of both that I often get when I have symptoms.
  18. Something I really miss doing since I was diagnosed is: Being able to pick up and go.  I always have to remember my medications if I’m going to be out over night.  I also have to time the correctly so I can’t sleep in too late or it messes up my schedule.
  19. It was really hard to have to give up: At first alcohol.  In fact I didn’t give it up for a long time because I knew better.  Now I don’t mind but as a college student that was impossible.
  20. A new hobby I have taken up since my diagnosis is: Fitness.  When first diagnosed I started walking and riding my bike.  Now I love running and other activities because they make me feel all around better.
  21. If I could have one day of feeling normal again I would: Go on a spontaneous trip.  My co-morbid anxiety spikes when I don’t plan everything to the littlest detail.
  22. My illness has taught me: I can handle much more than I thought and my life doesn’t have to be exactly how I planned at 16.
  23. Want to know a secret? One thing people say that gets under my skin is: “You don’t look sick.” or “So you’re crazy?”
  24. But I love it when people: Compliment me on how hard I work to keep my symptoms at bay.  A simple “I’d never know” when explain my condition is much better than “you don’t look sick” when I tell them I’m struggling.
  25. My favorite motto, scripture, quote that gets me through tough times is: Matthew 28:20 “And surely I am with you always to the very end of the age.”  Those words of Christ got me through some very difficult times.
  26. When someone is diagnosed I’d like to tell them: There is no one treatment but hold strong because you can and WILL survive.
  27. Something that has surprised me about living with an illness is: The annoying thought of “I wonder if I really have this” when you don’t experience symptoms regularly.  Those are dangerous thoughts that lead to not taking medications at times.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Come and visit me in the hospital in the middle of finals.  My entire floor sophomore year did this and I cried because I didn’t feel alone anymore.
  29. I’m involved with Invisible Illness Week because: You never know if someone close to you is struggling.  By putting my issues out there I hope others will be more sensitive to those around them in any situation.
  30. The fact that you read this list makes me feel: Honored that you care enough about me and others in similar situations :D
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6 Comments leave one →
  1. 13/09/2010 9:32 PM

    Wow. you are amazing for just writing this. You are so strong and inspiring!!

    I have some invisible stuff too, but I keep it pretty quiet.
    It’s such a challenge, I think about it every single hour in the day,
    especially now that I just started school. HUGE stress, and it’s making everything harder:(

    Again, thanks for sharing your story!

    • 14/09/2010 12:19 AM

      Thank you so much.

      Stress about how to handle my issues in new situations always happens. I’ll be thinking of and praying for you ask you adjust.

  2. 14/09/2010 9:50 AM

    wow, you’re really brave to write this.

    i’ve had bipolar patients and i never once thought they were crazy, or dangerous. its not their fault that they can’t control it.

    keep writing!

    • 14/09/2010 8:20 PM

      Thank you so much. I love your perspective. So many do not share it and that is why I wrote this.

  3. 14/09/2010 4:30 PM

    This is informative and eye opening. Thanks for sharing so openly and and transparently.

    • 14/09/2010 5:47 PM

      I’m glad you were able to take something away from this. It is so important to share.

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