Here we go, round three on National Invisible Chronic Illness Awareness Week, which is actually this week! If you missed them, here are round one and round two. If you wanted to know more about the awareness week, you can click the link in #29. I love this meme because it is spreading awareness of the illnesses that surround all of us, often without us knowing. Invisible illnesses are so often misunderstood because they are invisible. Let’s bring them to light! If you suffer from a chronic invisible illness, do the meme yourself or write another post about it, and link to it in the comments. I’d love to read about your journey!
1. The illness I live with is: Dysthymia or Dysthymic Disorder. Dysthymia is a chronic long-lasting form of depression sharing many characteristic symptoms of major depressive disorder. These symptoms tend to be less severe but do fluctuate in intensity. To be diagnosed, an adult must experience 2 or more of the following symptoms for at least two years:
- Feelings of hopelessness
- Insomnia or hypersomnia
- Poor concentration or difficulty making decisions
- Low energy or fatigue
- Low self-esteem
- Low sex drive.
- Poor appetite or overeating
I was going to highlight which of those symptoms I have..but..um…it’s all of them. I vary in how severe they are, from just background and there to, sometimes, dangerously depressed and in a deep, dark pit I can’t pull myself out of alone.
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: 2003 (at least)
4. The biggest adjustment I’ve had to make is: accepting that sometimes I can’t just decide to be happy, and need to find other ways to cope.
5. Most people assume: that “everybody gets sad,” and I’m just overstating my sadness.
6. The hardest part about mornings are: getting up and facing the day. There are mornings when I am more depressed and I honestly cannot see the purpose in getting out of bed.
7. My favorite medical TV show is: House. I love the sarcasm, even if the medicine is crazy.
8. A gadget I couldn’t live without is: my computer, which lets me talk to my hubby even when he’s at work.
9. The hardest part about nights are: when I’m still very depressed, and I know that if I can’t get it under control I’m just going to wake up depressed, too, and shoot my whole next day to hell as well.
10. Each day I take _1_ pills & vitamins. (No comments, please) I now take a multi-vitamin. They don’t help but they don’t hurt. I have taken anti-depressants before. The current round of specialists is due to the side-effects I suffered under the first drugs. The second kind of med didn’t help as much, just took the edge off, and I hate taking pills. I would have to go off them to have kids anyway, and it wasn’t worth it anymore, so I stopped.
11. Regarding alternative treatments I: am in therapy, and learning how to cope. I also use my dog as a psychiatric service dog. He alerts me when a dangerous depression is coming on. He provides deep pressure and lets me stroke and focus on him when I’m losing it. If I am at all teary, or get outwardly upset (or on cue) he will aggressively lick my face until I snap out of it and get back in control. This is not kissing, it is not comforting, it is obnoxious and I can’t ignore it. He has literally saved my life when I was suicidal at one point.
12. If I had to choose between an invisible illness or visible I would choose: visible. No doubt. When your illness is visible, there is something you can point to, and say, that! That is what is wrong! And people take you more seriously.
13. Regarding working and career: At the moment, I don’t have one. Being depressed at my structural engineering job was not helpful, and it could cause bad bouts of fatigue that really clouded my thinking. Also, when you really just don’t care about anything, it’s hard to keep going enough at work to not draw attention. But it is possible.
14. People would be surprised to know: I cannot decide to stop being depressed. That is one big difference between sadness and depression. When I am sad, I can decide to get over it, and just push through. When I am depressed, I can’t. I need help to climb out of a depression, and typically either my husband or my puppy can provide the help I need, giving me a focus and the type of support I have learned to grab onto to pull myself out of the pit.
15. The hardest thing to accept about my new reality has been: how out of my control some things, even in my own brain, are. I don’t do well when I don’t have control. :P
16. Something I never thought I could do with my illness that I did was: make my husband happy :-) I feel like he does so very, very much for me, and I still don’t quite get what he gets in return, but I’m so glad he loves me and feels fulfilled!
17. The commercials about my illness: upset me. They perpetuate the myth that depression is something that everyone gets, that it’s just some normal sadness, and sometimes you can take meds to make it better. Depression is not sadness, and I think that’s an important distinction for people to understand!
18. Something I really miss doing since I was diagnosed is: even before I was diagnosed, I knew I was depressed. There’s not a lot that changed with the diagnoses, and I’ve been sick my entire adult life.
19. It was really hard to have to give up: the certainty that I am entirely safe on my own.
20. A new hobby I have taken up since my diagnosis is: dog training. Working with animals does a lot to push back the depression! Even if their people are around ;-)
21. If I could have one day of feeling normal again I would: spend the day with my husband, relaxed, with no worries.
22. My illness has taught me: how important real friendship is. Those who put up with me when I’m down (and often whiny) are amazing. Those I’m willing to be down in front of are few, and awesome.
23. Want to know a secret? One thing people say that gets under my skin is: “I hate it when I’m sad, but then I just look on the bright side/have a picture I look at to make me smile/go out with friends/etc.” Again (notice a common refrain here?), an illness is not what everyone goes through. If it was, then it wouldn’t be an illness! I think people are trying to be understanding, but it only demonstrates that they really don’t understand, and, more subtly, that they think I’m weak for not dealing like them.
24. But I love it when people: are exactly as friendly with me when I’m down as any other time. Just be yourself, be happy, and the vibes can get through. It’s hard to find the balance between treating me like I’m a drama queen and treating me like I’m extremely fragile, but those who can strike the balance are invaluable!
25. My favorite motto, scripture, quote that gets me through tough times is: “If you’re going through hell, keep on going! Don’t slow down, if you’re scared don’t show it, you might get out ‘fore the devil even knows you’re there!” -Rodney Atkins (Everyone finds that song sad, I find it uplifting!)
26. When someone is diagnosed I’d like to tell them: Find a good support system, they are invaluable!
27. Something that has surprised me about living with an illness is: how completely pervasive it is in all facets of my life, but how hard it can be to recognize that the illness is responsible for the effects. That’s the insidious thing about invisible illnesses…there’s nothing to look at, and it can be easy to blame yourself for things that are wrong with your body. My brain is just as broken as a broken arm would be, but it is hard to remember that when you can’t see it.
28. The nicest thing someone did for me when I wasn’t feeling well was: when my hubby just sat with me and held me and let me cry. No impatience, no frustration, just love and support.
29. I’m involved with Invisible Illness Week because: if these invisible illnesses are out in the public mind, maybe we won’t find them so shameful anymore or view them as just weaknesses. We can’t accept something until we understand it!
30. The fact that you read this list makes me feel: Hopeful. That understanding will spread.
Now join in! Put the link to your post in the comments!