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30 Things About My Invisible Illness You May Not Know

invisible illness awareness week“But you don’t look sick” is a comment people with chronic illnesses hear a lot. And it’s true — 96% of all chronic illnesses are invisible, according to the folks behind Invisible Illness Awareness Week — but just because an illness can’t be seen doesn’t mean it isn’t real or debilitating.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic migraine

2. I was diagnosed with it in the year: 2002

3. But I had symptoms: All my life and have been chronic since I was 11

4. The biggest adjustment I’ve had to make is: Reconciling who I want to be with the limitations I face due to migraine (also, learning patience and flexibility)

5. Most people assume: Migraine is just a headache. Headache is a major part of migraine, but it is a neurological disorder with symptoms that can be felt throughout the body.

6. The hardest part about mornings is: Not knowing how much migraine will impact my plans for the day

7. My favorite medical TV show is: Scrubs

8. A gadget I couldn’t live without is: My Kindle

9. The hardest part about nights are: The nightmares and night sweats that accompany migraine attacks

10. Each day I take at least 17 pills & vitamins. (No comments, please)

11. Regarding alternative treatments: I’ll try anything that won’t harm me (and have even tried some things that are a little dubious)

12. If I had to choose between an invisible illness or visible I would choose: It’s hard to know for sure, but I appreciate being able to hide my illness when I want to.

13. Regarding working and career: I’ve gone from thinking I’d never have a fulfilling career to realizing I’ve been building one all these years I’ve been blogging. I just needed to feel well enough to take the next step… and I think I’m almost there.

14. People would be surprised to know: Just how much pain and fatigue I have on “good” days

15. The hardest thing to accept about my new reality has been: Hard work doesn’t always reap rewards

16. Something I never thought I could do with my illness that I did was: Find a fulfilling career

17. The commercials about my illness: Make it seem like migraine attacks are easily controlled with medication (they are for some people, but not at all for others)

18. Something I really miss doing since I was diagnosed is: Making plans without the caveat that I may have to cancel

19. It was really hard to have to give up: Food (literally for a while, now I have an extremely limited diet with only a few foods I truly enjoy)

20. A new hobby I have taken up since my diagnosis is: Meditation

21. If I could have one day of feeling normal again I would: That’s not something I let myself think about

22. My illness has taught me: I am stronger and more courageous than I ever thought possible

23. Want to know a secret? One thing people say that gets under my skin is: Positive thinking will “cure” me

24. But I love it when people: Keep in touch even when they don’t hear back from me.

25. My favorite motto, scripture, quote that gets me through tough times is: “When you’re going through hell, keep going” and “Never, never, never give up” — both from Winston Churchill

26. When someone is diagnosed I’d like to tell them: No one is going to cure you. Health care providers have valuable knowledge and can help you, but they aren’t mechanics. You have to play an active role in you own care, investigate potential treatments and be willing to pursue unexpected avenues.

27. Something that has surprised me about living with an illness is: How often people are blamed for being sick

28. The nicest thing someone did for me when I wasn’t feeling well was: My husband telling me that when I don’t feel like I have the strength to continue, he’ll carry me

29. I’m involved with Invisible Illness Week because: Being open and honest about illness is the only way anyone’s beliefs about it will change

30. The fact that you read this list makes me feel: Cared for

Want to respond to the 30 things meme but don’t have a blog? You can leave your responses in the comments!

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Headache Disorders & Migraine Blog Carnival: Last Call for Submissions

Submissions for the September Headache Disorders and Migraine Blog Carnival are due tomorrow, Sept. 5, by 11:59 p.m. Invisible Illness is the theme of this month’s carnival. Let us know your thoughts on the pros and cons of having an invisible illness or respond to the 30 Things meme sponsored by the 2014 Invisible Illness Awareness Week, which will be Sept 8-14.

To join us, email the link to your post to kerrie[at]thedailyheadache[dot]com and include the following information with your submission:

(1) Your name as you would like it to appear in the carnival.
(2) The title of the blog post you’re submitting.
(3) The url of the blog post you’re submitting.
(4) The title of your blog.
(5) The url of your blog.

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Understanding of Invisible Illness & Visible Disabilities

When you’re struggling with the frustrations of an invisible illness, it’s tempting to think, “If only people could see how sick I was, they’d understand.” While people may have a different understanding of visible disabilities or illnesses than they do for invisible ones, the understanding isn’t better or more. The judgement and criticism still come, just in different ways.

Despicable Memes is an excellent article that addresses some of the harmful beliefs about physical disabilities, particular people in wheelchairs. This particular article struck me because I saw so many parallels with the aspects of invisible illnesses that people struggle with. In particular,

  • If your symptoms or behaviors don’t fit with what other people expect of you, you’ll be judged.
  • When you speak up about how hurtful and damaging the comments are, you’ll be told you’re too sensitive.
  • People are only comfortable talking about illness or disability if the focus is on working hard, getting better, being strong, and overcoming strife.

Obviously, having a visible disability isn’t a breeze. I know that you know that. Still, I’ve seen plenty of people online say that they wish people could see their invisible disability so they’d understand it. I do not. Not only because I don’t want stares and pity or because I like being able to hide my illness when I want to, but because the grass is just as dry and brittle on the other side.

This month’s Headache Disorders & Migraine Blog Carnival, which I’m hosting here on September 8, will be devoted to invisible illness. Bloggers, if you’d like to share your thoughts on invisible illness, please read the call for submissions and send me your posts by 11:59 p.m. on Friday, September 5.

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Hormonal Birth Control for Menstrual Migraine & Insurance Denials

Despite the Affordable Care Act’s required coverage of birth control, some insurers are denying coverage of the birth control patch or NuvaRing, NPR reports. There are a few exceptions to the rule, but nearly all health plans are required to cover all FDA-approved birth control. If you have been denied coverage, NPR recommends appealing the denial and contacting your state insurance board.

How is this relevant to headache/migraine/chronic illness? Hormonal birth control is one method of managing menstrually associated migraine attacks, which tend to be more severe than the migraines a woman has other times of the month. The patch and the ring provide a steadier dose of hormones than a pill does, which makes them more effective for this purpose.

I’ve been using NuvaRing continuously (with one-week breaks every three or four months) since January 2010 and it has been tremendously helpful. Now, the most severe migraines I get happen the few times a year I have to stop the ring for a withdrawal bleed. (You can learn more about skipping periods on The Well-Timed Period.)

This method is generally not recommended for women who have migraine with aura, who are at greater risk of stroke if they use hormonal birth control. However, I recommend talking it over with your headache specialist to decide if it is a good option for you, whether you have migraine with or without aura. Given the frequency and severity of my migraines, my headache specialist said he’d advise me to continue using the NuvaRing even if I did have migraine with aura.

(If you don’t want to/can’t use hormonal birth control for some reason, triptans can be used to prevent menstrual migraine attacks.)

I always love to read your comments, but I’m on vacation and won’t be able to reply until the week of Sept. 8. Please don’t think I’m ignoring you!

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Call for Submissions: September Headache Disorders & Migraine Blog Carnival

In honor of Invisible Illness Awareness Week, Invisible Illness will be the theme of September’s Headache Disorders & Migraine Blog Carnival, which I’m hosting here on September 8. Let us know your thoughts on having an invisible illness or respond to the 30 Things meme sponsored by Invisible Illness Awareness Week.

To join us, email the link to your post to kerrie[at]thedailyheadache[dot]com by 11:59 p.m. Pacific time on Friday, Sept. 5. Please include the following information with your submission:

(1) Your name as you would like it to appear in the carnival.
(2) The title of the blog post you’re submitting.
(3) The url of the blog post you’re submitting.
(4) The title of your blog.
(5) The url of your blog.

I’m looking forward to reading and sharing the submissions!