Invisible Illness Awareness Week–Series of Articles on Endometriosis

Here is a post from guest blogger with excellent information and links about endometriosis!

She started a blog to help her in her journey through grief, infertility, fibromyalgia, endometriosis, migraines, PTSD, depression and, hopefully, to help others in similar struggles. She uses the name “snowdroplets” because she wants to convey both her sadness and hope. Snowdrop flowers are a symbol of hope. Some will bloom in winter. Droplets…as a symbol of tears. Also as cleansing water and the life-giving properties of rain. Put together… snowdroplets.

Please click on “snowdroplets” below to see her entire blog.

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As we kick off Invisible Illness Awareness Week, I was so happy to see The Guardian publish a whole series of articles on endometriosis today!! Endo is part of my #invisiblefight. It made me so very happy to see this awful illness receive this kind of attention and to see the discussions that these articles kicked off in the comments section. I hope this will help us to get more funds for much-needed research. Here are a few of the articles:

1) Endometriosis: the hidden suffering of millions of women revealed

Often dismissed as ‘women’s troubles’, endometriosis affects one woman in 10 of reproductive age, yet a lack of research and funding means sufferers can live in severe pain, unable to work or socialise…

http://www.theguardian.com/society/2015/sep/28/endometriosis-hidden-suffering-millions-women

2) Endometriosis: 20 things every woman (and every doctor) should know

For example: you do not have this disease because you failed to breed in your early 20s. And pregnancy is not a cure!

http://www.theguardian.com/society/2015/sep/28/endometriosis-20-things-every-woman-and-every-doctor-should-know

3) ‘I’m not a hypochondriac. I have a disease. All these things that are wrong with me are real, they are endometriosis’

http://www.theguardian.com/society/2015/sep/28/im-not-a-hypochondriac-i-have-a-disease-all-these-things-that-are-wrong-with-me-are-real-they-are-endometriosis

4) ‘The pain is paralyzing’: 30 women describe living with endometriosis

http://www.theguardian.com/society/ng-interactive/2015/sep/27/the-pain-is-paralysing-30-women-describe-living-with-endometriosis

5) Endometriosis: if your doctor isn’t taking you seriously, it’s time to find a new one

http://www.theguardian.com/commentisfree/2015/sep/29/if-your-doctor-isnt-taking-your-endometriosis-seriously-its-time-to-find-a-new-one

Thank you Guardian, for raising the profile of this disease!

Thank you, snowdroplets, for writing this blog post!

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Invisible Illness Awareness Week is September 28 – October 4

This post is from the Rest Ministries Invisible Illness Week website (http://invisibleillnessweek.com/)

What is your invisible fight?

Invisible Illness Awareness Week is September 28 – October 4 and we are creating a big buzz in social media, spurring on awareness, understanding, and dispelling myths and misconceptions about living with illness.

We live in a culture that understands acute sickness. Tell a friend you have strep throat and your friend has an idea about what your next three days will entail. Friends grasp your need to rest, to eat a certain way, that you may or may not be online, the amount of medication you may take, and that you likely won’t be getting together for an event or working.

Chronic illness, however, is confusing to most people.

Illnesses that are indefinite (chronic) have a growing list of symptoms that differ between those with the same illness–and overlap with those who have different illnesses. There are no rules or guidelines about what you can and can’t do or should or shouldn’t do.

How can a person with illness barely be able to get out of bed one day and running errands for two hours the next day? If the medications are working, why haven’t you returned to your favorite activities? Are you depressed, and that is why you keep going back to the doctors over and over?

All of these are common assumptions from one who has not experienced a chronic illness.

Invisible Illness Awareness Week is trying to change that with a 2015 “My Invisible Fight Photo Campaign”

What are the photos of?

This is the fun part! Take photos of anything that is an #invisiblefight for you.

What is a fight for you that few people would even notice or understand?

Some ideas of invisible fight?

  • A staircase (or even one stair!)
  • A restaurant menu
  • The shower
  • The scale
  • A jar of spaghetti sauce (cannot open it!)
  • A pair of shoes
  • Your bed
  • A certain outfit or item of clothing
  • A blow dryer (that is heavy to lift)
  • A heavy door
  • A car’s steering wheel
  • Your purse (too heavy to carry?)

It doesn’t have to signify something you cannot do. It can represent something that is just an extra challenge for you, something that makes you sigh with frustration, or perhaps hold your breath with a bit of anxiety.

You can take as many photos as you want and share them all over the place between now and October 4th.

If you can, add #MyInvisibleFight to the actual photo.

What hashtags to use

The specific hashtag for this event is #MyInvisibleFight.

Additional hashtags you can use that are for Invisible Illness Awareness Week 2015 are: #invisibleillness #invisiblefight and #iiwk15.

Here is one of the photos I’ve posted:

A pic of how I usually look to others, and how I look at home. It was hard to post the 2nd pic, but it's important to make people see the "visible" part of invisible illness. #myinvisiblefight #iiwk #invisibleillness

A pic of how I usually look to others, and how I look at home. It was hard to post the 2nd pic, but it’s important to make people see the “visible” part of invisible illness. #myinvisiblefight #iiwk #invisibleillness

Lisa Copen established Invisible Illness Awareness Week in 2002 and she is excited to see how you touch lives this year in 2015!

30 Things About My Invisible Illness

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Ulcerative Colitis, Endometriosis, Late Stage Lyme Disease

2. I was diagnosed with it in the year: 1982, 1987, 2007
3. But I had symptoms since: same year as diagnosed for first 2; who knows for last one?
4. The biggest adjustment I’ve had to make is: take medication daily, being willing to change plans
5. Most people assume: since I look great, I must feel great.
6. The hardest part about mornings are: getting awake and moving
7. My favorite medical TV show is: none now–used to like ER.
8. A gadget I couldn’t live without is: my Healthy Back Bag
9. The hardest part about nights are: getting to sleep.
10. Each day I take _18_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: research them thoroughly and make sure God has given me a peace about them before I try them.
12. If I had to choose between an invisible illness or visible I would choose: neither, but God has used it mightily in my life to teach me, humble me, and to help others.
13. Regarding working and career: God has given me just the right job for this time in my life.
14. People would be surprised to know: that I struggle with pain and sleep everyday.
15. The hardest thing to accept about my new reality has been: I can’t always do all that I want to do.
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness: none.
18. Something I really miss doing since I was diagnosed is: Except for short period, I haven’t missed much.
19. It was really hard to have to give up: teaching certain group fitness classes.
20. A new hobby I have taken up since my diagnosis is: reading and writing….lots of it.
21. If I could have one day of feeling normal again I would: thank God for that precious gift!
22. My illness has taught me: that I am not in control and that God wants me to comfort others as He has comforted me.
23. Want to know a secret? One thing people say that gets under my skin is: You look great; you must be feeling better!
24. But I love it when people: truly want to know how I am doing and are willing to specifically pray for me.
25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 16:8 “I have set the Lord always before me; because He is at my right hand, I will not be shaken.”
26. When someone is diagnosed I’d like to tell them: I will pray for them, answer any questions they might have, get as educated as you can about your illness and treatment, and find a doctor who will treat you as a “whole” person.
27. Something that has surprised me about living with an illness is: I’ve had to rely on God’s strength more than my own.
28. The nicest thing someone did for me when I wasn’t feeling well was: made me a meal (I don’t enjoy cooking much even when I feel great!).
29. I’m involved with Invisible Illness Week because: we have 4 people in our family and each of us has at least one chronic invisible illness.
30. The fact that you read this list makes me feel: grateful and thankful. Thanks for reading and thanks for your prayers!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com