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Neurodiversity Awareness/Appreciation

Neurodiversity Awareness/Appreciation

Monday, September 8, 2014

Invisible Illness Week

 I am blogging for Invisible Illness Awareness Week!

Sometimes I wonder if you guys get tired of me complaining about all of my disorders and illnesses and what have you. But one of the reasons I started this blog was so that I could help others understand these things, and so that I could meet others who might understand me. So I hope you are not sick of hearing about it!

When most people talk about invisible illnesses, they are talking about physical illnesses such as Chronic Fatigue Syndrome, Fibromyalgia, Diabetes, Lupus, or migraines. However, mental illness is also considered an invisible illness.

An invisible illness is a concept similar to an invisible disability. Basically, it is a chronic illness that a person has, that you cannot tell by looking at them. Also, the person might seem and act perfectly healthy one day, and then claim to be in pain or feel ill the next day. Sometimes people with invisible illnesses are accused of making it up, imagining things, trying to get attention, making excuses to get out of things, etc. But the truth is, you cannot see a person's pain just by looking at them. Also, many people with chronic illnesses can feel awful one day, and feel comparatively much better the next, and then awful again the next day. This is also true for mental illness. Just because a person is smiling and acting happy right now, does not mean that they don't live with depression.

At any rate, the Invisible Illness Awareness Week has a meme called 30 Things, in which you answer 30 questions about your illness. I though I would do it. Mine is a little different in some parts, because I've had depression and anxiety since early childhood, whereas some others only started getting illnesses later in life, and therefore had to give up things that they could do when they were healthy. Well... Here you go.

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with is: Depression, anxiety (and also allergies and anemia.)
2. I was diagnosed with it in the year: 1999 
3. But I had symptoms since: I was a small child. 
4. The biggest adjustment I’ve had to make is: my expectations of what I'd be able to do with my life. When I was a kid, I definitely didn't think I'd grow up to be where I am now. I had high hopes for my life. I've had to readjust my plans and realize that these things might just take me a little longer than I thought. 
5.. Most people assume: I am just trying to get attention, or I am just childish.
6. The hardest part about mornings are: Convincing myself to get out of bed. I often feel like I don't really have anything to live for or any reason to wake up. This is why having a dog is good for me. She will happily stay in bed all day with me, but I know she needs to use the bathroom and get some exercise, so I get up because of her. 
7. My favorite medical TV show is: It used to be ER but I haven't seen it in a long time. And also that one that used to be on Lifetime. What was that? Was that ER? Hmm. 
8. A gadget I couldn’t live without is: my Kindle because I love to read!
9. The hardest part about nights are: sometimes having insomnia. Sometimes just being restless, and other times because of anxiety. Lying quietly gives my nervous thoughts time to jump around and get noisy!
10. Each day I take 6 pills & vitamins. (No comments, please) <--- I didn't write that... it is part of the meme, 
11. Regarding alternative treatments I: would be open to them. I'd probably want to start trying them while still on my regular medication, and if it seemed to help me, I might slowly reduce my regular medication. 
12. If I had to choose between an invisible illness or visible I would choose: I don't know. I think I would still choose an invisible illness, because I'm used to it by now, and having something else would feel weird. 
13. Regarding working and career: I want to work. I feel at my best when I am working, because I am busy, and I am doing something that I consider important. But sometimes my anxiety and depression prevents me from actually going to work. I get a little agoraphobic. This has actually caused me to quit several jobs with little or no notice, because my anxiety built up to the point where I could not stand another day... even though when I was actually at work, I was okay. That is sort of confusing, I know. 
14. People would be surprised to know: I am intelligent, I am resourceful, and when I am healthy I am brave and independent. I'm not trying to brag. I am not saying I am more intelligent than most other people. I'm saying, people often talk to me like I am a small child. Or they talk to each other in front of me, as if I am not there, because they think I won't understand. I have actually learned a lot in life that way, because people don't hide things from me that they would hide from others. 
15. The hardest thing to accept about my new reality has been: This has been my reality most of my life, so it isn't new. I guess the hardest part of knowing I have it is accepting that I will probably have it for the rest of my life, I will probably have to be on medication for the rest of my life. I am not going to wake up one day and feel "normal." When I was a kid I used to think, when I became a teenager I would be just like other people. Then when I was a teenager, I thought it would happen once I was twenty-one. In my twenties, I thought it would happen when I turned thirty. Now I realize... this is just how my brain is, and it isn't going to change. 
16. Something I never thought I could do with my illness that I did was: learn to drive. I didn't learn to drive in high school. I couldn't handle all of the different stimuli coming at me at once when I drove. That was probably more because of ADHD and Aspergers though. When I was 22, I finally learned to drive, because I was moving to a small town that didn't have very good public transportation. My dad taught me how to drive well enough to pass the test and get my license. I taught myself the rest of the way just by driving around on long, empty roads in that small town. 
17. The commercials about my illness: claim that if I take medication I will be running around smiling and flying kites and stuff. 
18. Something I really miss doing since I was diagnosed is: This doesn't really apply to me since I have always had it. 

19. It was really hard to have to give up: This doesn't really apply to me since I have always had it. 

20. A new hobby I have taken up since my diagnosis is: That still doesn't really apply, but I guess it led to my blogging!
 
21. If I could have one day of feeling normal I would: move to Oregon really quick, before my anxiety and depression caught up with me. 

22. My illness has taught me: that my family will do anything for me. 

23. Want to know a secret? One thing people say that gets under my skin is: that depression is not real, that it is just an excuse for people who don't want to deal with life. That "everyone" is depressed these days. That being on medication dumbs me down. That I should just "pull myself up by my bootstraps." (Do boots even have straps?) That I am bringing everyone else down. Sorry, that is more than one thing. 

24. But I love it when people: just talk to me, keep me company, keep me from having to be alone, and convince me to go out and do things with them. 

25. My favorite motto, scripture, quote that gets me through tough times is: Uh... I'll have to find one some day I guess. 

26. When someone is diagnosed I’d like to tell them: If you are on medication, don't stop taking it just because you feel better. I've done that so many times, and it just leads to a huge unexpected episode at an inconvenient time. Also, explore all different kinds of therapies. I do equine therapy, and I love it. I want to do art therapy. There are many other options besides just sitting in an office and talking to someone. 

27. Something that has surprised me about living with an illness is: it is just my normal life. It usually isn't unbearable. Even though I hate this expression, it just is what it is. 

28. The nicest thing someone did for me when I wasn’t feeling well was: Hmm, I don't think anyone actually ever did something specific for me. My aunt when she forgave me and still  kept talking to me after I bailed out on moving to Oregon. My parents when they forgave me and helped me after I bailed on going away to college years earlier. I guess just tolerating me. 

29. I’m involved with Invisible Illness Week because: I like to help people understand. 

30. The fact that you read this list makes me feel: HAPPY! 
Okay. That is it. I actually have a visible illness right now, as well... an annoying cold... so I am going to go to bed early. Goodnight! 


5 comments :

  1. Ohhhh, the depression part fits me so well. It runs in my family. I've never taken medication for it cuz, frankly, that scares the piss out of me (I've had 3 friends in the past decade commit suicide shortly after starting or changing antidepressants), so I just find my own ways to deal with it...but they're not very effective. I'm a stay-home mom who secretly wishes she'd die in her sleep and is always a little disappointed when I wake up in the mornings. And then I wind up spending half my day lying in bed because I feel too paralyzed to actually get up and accomplish anything. Not that I want to kill myself. I just want to...cease being alive sometimes. And this horrifies people. I think Allie from Hyperbole and a Half summed up the whole depression experience absolutely perfectly. It's in two parts. If you haven't read it, you should do so.

    Anyway, chin up. We'll get through this, all of us. Just take it one day at a time.

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  3. Sorry for being gone from your blog for so long! The morning sickness is beginning to leave me for long enough that I feel more like connecting with people again online. Thanks for sharing. I didn't know there was such as thing as Invisible Illness Awareness Week. You learn something every day!

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  4. I think it's really cool that one of your goals is to help people understand your invisible illnesses!

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  5. Hi there!
    You are so rad for filling out this "interview" so honestly and publicly. As someone with an "invisible" illness, as well, some of these things really hit home for me.
    "I guess just tolerate me." Wow, that was a powerful statement that really resonated with me.

    Cheers,

    ---
    *Carmen
    Hi there,

    As a sufferer from SA as well, I think the "decline so often that people stop asking" one is the hardest. Like, I know that I've brought it on myself...but it is also terribly isolating at times. Also, it's difficult when I want some sort of company but whoever I'm talking to isn't willing to make the effort to come to me every once and a while. Not their house, not a mutual friends', not a coffee shop...sometimes I can't get off the couch without my heart hammering and I just want someone to stop by for some tea, y'know?

    Great blog! Thanks,

    ---

    *Carmen
    http://ohtheplacesyoullblog.com/

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