30 Things About My Invisible Illnesses You May Not Know

30 Things About My Invisible Illnesses You May Not Know

I’ve done this meme in the past, but every year provides a new perspective, so I’m going to try it again.  Anything to promote awareness of Invisible Illness Awareness Week!

1. The illness(es) I live with are:

  • Asthma – more or less since birth…
  • Autoimmune Urticaria/Angieodema – diagnosed in 2001 – is now under control
  • Celiac Disease – diagnosed in 2002 – symptoms since childhood
  • Generalized Anxiety Disorder – diagnosed in 2006 – but I’ve had symptoms all of my life
  • Major Depressive Disorder – diagnosed in 2006 – symptoms since age 13
  • PCOS – diagnosed in 2008 – symptoms since 13
  • Endometriosis – diagnosed in 2012 – symptoms since 13
  • Gastroparesis – diagnosed in 2011 – symptoms since 2010
  • Fibromyalgia – diagnosed in 2011 – symptoms since childhood
  • ME/CFS – diagnosed in 2011 – symptoms since 2009
  • High functioning autism – diagnosed 2012 – have had all of my life
There are probably a few others kicking around not yet diagnosed… like POTS (which I’m positive I have). Now if I were to list some of the symptoms that went with these, I’d be here all day – but severe migraines, sensory problems, and constant pain and fatigue all play a big role.

2. I was diagnosed with it in the year: See question 1
3. But I had symptoms since: See question 1
4. The biggest adjustment I’ve had to make is: Trying to find value in myself as a human being, when I don’t actively participate in the workforce and/or bring any financial help into the household.  I’ve had to change my way of thinking about how my life was going to turn out, and I’ve had to move home instead to be looked after by my parents.  Another big adjustment is the loneliness of being stuck in the house day in and day out.
5. Most people assume: That I’m lazy, a hypochondriac, over-exaggerating, etc…mind you, if I get the chance to leave the house, I’m usually in a decent state.  No one other than my parents see me in my worst state.
6. The hardest part about mornings are:  It’s hard for me to wake up and get out of bed, plus I need at least an hour for the pain medication to start working.
7. My favorite medical TV show is: I don’t watch much television.
8. A gadget I couldn’t live without is: My iPad with an Internet connection, as otherwise I would have no social life whatsoever.
9. The hardest part about nights are: Remembering what I’ve lost and crying myself to sleep.  Not every night though, just the toughest ones.
10. Each day I take __ pills & vitamins. (No comments, please) Too many. 35 maybe?  I’m not getting out of bed to go downstairs and count.
11. Regarding alternative treatments I:  Have tried and tried, so please don’t always recommend a genius alternative solution.  I find that there are positive aspects to both alternative treatments and the medical system.
12. If I had to choose between an invisible illness or visible I would choose: VISIBLE. The judgment is so painful.
13. Regarding working and career:  I really hope that sometime I will be able to work a part-time job again, but I know I’m still a ways away from that.  Right now, improving my health is my job, and it’s the hardest task I’ve ever attempted.
14. People would be surprised to know:  That I was diagnosed with almost every mental illness under the sun before I had a doctor pick up on the high-functioning autism.  After reading about 15 books on the subject, I see my life in an entirely different way.  So many things make so much more sense now.
15. The hardest thing to accept about my new reality has been:  Not getting the sense of accomplishment that I used to get by getting good grades in school and university.  I would love to be working, if only I could find something that would work with my limited time awake, time not in pain, and distress from being around noise and people.
16. Something I never thought I could do with my illness that I did was:  Get a degree.  I have a Bachelor of Arts in Communication Studies, although I’ve never been able to put it to good use.
17. The commercials about my illness:  I’ve only seen Fibromyalgia commercials and they are ridiculous.
18. Something I really miss doing since I was diagnosed is:  Getting dressed up… I still do sometimes, but it seems silly to get dressed up when no one sees me.
19. It was really hard to have to give up:  The list is so long that I can’t even answer the question…
20. A new hobby I have taken up since my diagnosis is:  Art journaling – I really do believe it is therapy
21. If I could have one day of feeling normal again I would:  Spend a whole travel day doing touristy things, like visiting museums with my family, without having to cut the day super short due to my illnesses.
22. My illness has taught me:  That people have an immense fear of sickness.  I had to drop off the face of the Earth to a degree, but I was surprised by how many people in my life disappeared altogether.
23. Want to know a secret? One thing people say that gets under my skin is: “You never get dealt anything in life that you can’t handle”, “If you spent less time laying, you’d have more energy”, etc…  People really have no idea until they are in the situation themselves.
24. But I love it when people:  Make the effort to come visit me for an hour, send me a care package, or even offer to help around the house!
25. My favorite motto, scripture, quote that gets me through tough times is:  I don’t think any of this is simple enough to condense into a motto.
26. When someone is diagnosed I’d like to tell them:  That the way they experience the world is going to be forever altered, but you will learn some useful life lessons earlier than most.
27. Something that has surprised me about living with an illness is:  That it is possible to ALWAYS be tired – and not just to the level that healthy people experience – I’m talking bone-crushing fatigue all the time.  Sometimes I’m too tired to lift a fork.  Also, how rapidly I can shift from feeling bearable to unbearable.
28. The nicest thing someone did for me when I wasn’t feeling well was: A few simple gestures, like running to the store to get me comforting drinks, and setting me up in bed with all the things I need for a full day there.
29. I’m involved with Invisible Illness Week because: I live this life and awareness is important to me!
30. The fact that you read this list makes me feel: Like I might be able to make the slightest difference.

7 Responses »

  1. You do make a difference! Without your honesty & vulnerability, so many chronically ill would feel alone.
    I was so happy the day that I “met you” on Twitter. I had that, “me too”! connection w/ you immediately & I am so grateful <3
    My favorite part of this post is your insight that chronically ill learn their life lessons sooner than most healthy people. So true, & a great observation. Love & Hugs, Lisa (@lpjph)

  2. Wonderful, inspiring if a little heartbreaking to read for one so young but you have such a strength a deep core maturity and honesty that is so refreshing. You have a well informed insight into your illnesses and your blog is so important; it’s not the quantity but the quality of your writing we all understand the days where you can’t. I’ve read a few of these but yours filled my heart with the strength of your being and my eyes with tears not of sadness but of recognition, and the lack of justice that you experience so much. Please remember you have a true gift I’m sure we others see it more clearly than you do, your future will unfold for you organically in time as your talent develops further; keep doing what you love, take every ounce of joy out of it, just keep doing what you’re doing, it will all make sense…. you have skills lady and you kinda ROCK!

  3. This is brilliant, Annie. I particularly like it being too complex to condense into a quote. I get fed up with quotes these days. Better to find our own words to say something if we can.

    And as others have said, don’t worry about not writing at times. The whole thing about being chronically ill in these ways is that sometimes we just can’t do stuff, or doing it would make us worse. If a reader doesn’t understand that that’s not your problem.

  4. I identified with a lot you had to say in this, thank you for writing it – must have taken a lot out of you. I really like your blog – I have been stalking it for a long time but just now getting the courage (+ energy and brain faculty of course) to comment! :)

  5. This was great to read, and a wonderful insight into your life and what you struggle with. I’m going to try and do this on my blog if I have a little time this week too; thanks for the inspiration!

  6. It is intertesting, and a little heartbreaking, to read your list.
    You are tough and talented and I’m full of admiration for your skills in writing and in living with illnesses.
    Number 27 is one of the things I wouldn’t have believed before either. That and how people are scared or run off for whatever reason. I was talking to a friend who has fibromyalgia and she surprised me when she said admired me for telling people about my illness. I feel like I should be honest and tell people about how I am, just like I would have told them about my career or personal life. Things like this happen and the more people know someone with these illnesses, the easier it is for everyone. I don’t think I’m brave for having the conversations, talking about emotions and the impact is much harder and that is what I admire you for. My friend reminded me that there are so many onus suffering away in our bedrooms and feeling connected and understood is a powerful thing.
    Thanks Annie xx

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