Jeanne’s Endo Blog – Chronic Conditions at Work

Jeanne at Jeanne’s Endo Blog has once again opened my eyes to issues that are surrounding the condition of Endometriosis.  Please please please have a look at her post dated 16th February and sign the petition!

 

http://www.endendoat.blogspot.com/

 

My dream is that a cure is found and that no other woman has to suffer the way I’ve done since I was 12 (I’m nearly 38 now!) and have to wait for years and years for a diagnosis.  Initially I was diagnosed with “cramps” when I was 12 and told to take painkillers.  The sad truth is that now I do have a proper diagnosis, the only treatment is painkillers, surgery and more recently I’ve been told to run my birth control pill packs together so that I have fewer periods.  This kind of treatment is simply not good enough! 

 

If you want to read an amazing article about living with chronic illness and maintaining a career/work please click on the article below.

 

http://www.more.com/work-money/work/chronic-illness/

 

This article was recommended by Jeanne in her blog and is a wonderful read. 

 

I will confess that I’ve not told my new employer about my medical conditions, mainly because I was desperate for the job and need to be able to cover the mortgage.  Sure, I’m confident that I can do the job – on the days when I’m not in pain.

 

I have had to learn how to communicate with doctors about the intensity of pain, the length of pain and how it effects my day-to-day life.  After reading the article, I realise that it’s OK to tell my work colleagues about my condition – but I’ll probably say that I’m getting better while meaning “I’m learning to live with my condition.”

 

As pain affects me only at certain times in my cycle, I’ve managed so far to omit telling anyone at my new job.  It wasn’t that long ago that the pain has been known to be so intense that I have been known to be sent home from work.  (Which is a really big thing for me considering I rarely have time off work for any other reason! I usually only relent after kicking and screaming and saying “but I’m not contagious!”)  If my pain arrives at the weekend (or indeed once I’ve been sent home) the best thing for me to do is load up on my prescription painkillers and make a boiling hot hot-water bottle and curl up on the couch with a movie or just go to bed.  

 

Unfortunately, my condition is such that I know it will eventually get worse and will be so bad that I’ll need surgery again.  (I’ve had two surgeries for it already!)  When I’m suffering with the pain, I can’t cope.  Once I’ve had enough painkillers to cope with the pain, I can’t cope because I’m really doped up.  Either way I’m completely incapacitated and unfit for work.

 

Should I tell the gang at my new work?  Would it be worth doing considering I’m not planning to have a period as often as before?  Isn’t it awful that anyone should have to think like this and worry about keeping a job! 

 

I’ll try and remain positive and ponder my options…  Does anyone have any suggestions?

 

Foxy

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13 thoughts on “Jeanne’s Endo Blog – Chronic Conditions at Work

  1. Hi Foxy,

    I’m pretty new to finding blogs of other endometriosis sufferers – I found your site through either Jeanne’s or EndoChick’s links.
    I was fired from a job in 2007 for missing 1-4 days per month because of endometriosis pain. I took them to the labor board over it and won.
    Do you live in the U.S.? If so, you should be able to talk over your options and rights with the U.S. Equal Employment Opportunity Commission (EEOC) at http://www.eeoc.gov/.
    Depending on what state you live in, there is also the possibility of a labor board to talk to. You can also check out the links under “Job Discrimination” on my website at http://www.livingwithendometriois.org/

    You should not have to live in fear of whether you’ll lose your job because of this illness! None of us should!

  2. Steph, thanks very much for reading and for your comment. I’m so sorry you’ve had a hard time with endometriosis and that you were fired. At least you won the suit!!

    Unfortunately I live in the UK. Well, it’s good in many ways but it does mean that a lot of US information simply doesn’t apply to me.

    You are so right that no one should live in fear of losing our jobs over this illness. I’m afraid that “should” is the key word in that sentence. I know I’m slightly paranoid anyway (which is a LONG and BORING story!) which means that I sometimes worry about things I cannot change. Actually, is that a woman thing or is it just me? Hmmmmmmmm.

    I’ve just had a quick glance at your website – you’ve obviously done an awful lot of research! I’m going to enjoy looking through all that information! Thanks so much for getting in contact.

    Take care,
    Foxy

  3. I wouldn’t speak to your boss or co-workers until you find out how much pain you will have since your surgery. Less periods could mean less pain, and it will surely help having fewer periods. I think it’s best to share on an “as needed” basis. They don’t need to know right now.

  4. Foxy,

    Ditto to what Linda said.

    Thanks for stoppoing by my blog again. I’m glad you like the Fighting Fatigue link. It’s a great blog.

    Endometriosis Awareness Month is going to be BUSY starting today… March 1st!!! 🙂

    Stay tuned!

    Jeanne

  5. Foxy,

    I just plugged your blog. I sent a tweet on twitter with your link. I marked the tweet with the hashtag at the end of the message like this:

    #endo

    Jeanne 🙂

  6. Foxy,

    With the TweetDeck desktop application (free install from Internet), you can easily see all #endo messages on 1 screen and answer them/retweet them very rapidly!

    Jeanne

  7. Jeanne, OK. I confess I’ve only just opened a Twitter account. It will probably take me some time to work it all out!

    Thanks for tweeting me.
    Foxy

  8. Foxy,

    There’s a LOT going on for Endometriosis Awareness Month!

    Please stop by my blog when you get a chance to see where things are at with Endometriosis Awareness Month:

    the progress on the endometriosis awareness petition
    the letter-writing campaign for media attention to endo FACTS
    the twitter #endo campaign and what we’re doing to promote it
    stories from endo patients/Guest Blogs
    and much more…

    Things are hopping!

    To quote Endochick’s slogan:
    “MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS”

    Here are 2 samples of some of the most popular #endo tweets we have in circulation (tweets people nicely keep retweeting:

    1) MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS #endo PLEASE RETWEET
    2) Endometriosis affects more ppl than AIDS and cancer! (Source: Ohio State University Medical Ctr … see attached URL)
    http://medicalcenter.osu.edu/patientcare/healthcare_services/gynecological_health/gynecological_statistics/Pages/index

    TweetDeck users can fit that entire 2nd tweet by listing the OSU link as an attachment to the tweet text.

    Think about that statistic! Endometriosis is more common than AIDS and more common than cancer!! Why on Earth is it not getting more press coverage??? It just plain wrong.

    Thanks for helping us spread the word about endometriosis! We’re helping people! New endo patients are finding my blog every day now. It’s working!

    🙂

    Jeanne

  9. Jeanne, you really are an inspiration! I sometimes wish I had your energy!

    I’ve started on Twitter but can’t seem to get my head around it. I didn’t think that I was so old that I wouldn’t “get” twitter – but I’ll keep trying!

    Thanks for your comment.
    Foxy

  10. Foxy,

    Don’t let my appearance of energy fool you. I’m exhausted 24/7… especially since Endometriosis Awareness Month started! 🙂

    As far as twitter is concerned, I would be happy to help! Let me know what you’re getting stuck on. If you’re doing standard twitter from the web, just log in to your twitter page (mine is http://twitter.com/jeanneendo… yours is the same beginning plus whatever you picked for a userid), type your message (140 characters or less), and click send. For replies, click the little arrow (to right of incoming message) and a window will pop up. It’ll have an @ sign in front of it. For example, replying to me on twitter would say @jeanneendo at the start of the tweet message. Then type your message and send.

    To send direct messages to someone, they have to be “following you” on twitter but you can “cheat” by replying to an existing comment of theirs (relevant or not) or that’ll get you connected to them to let them know you’d like them to follow you (if they choose to do so). I finally had to turn off my mail notifications b/c so many ppl have added my on twitter lately it was clogging my email. So sometimes ppl message me via creative means like this. 🙂

    If you decide to install TweetDeck (wish I had sooner), it’s even easier. You can download the TweetDeck software from the Internet. (I just Googled it). It’s a desktop application that help you manage your tweets (messages). I’m still getting used to it but I just LOVE it!! It’s a huge time-saver for retweets. (No manually typing RT at the start of the message. Just click retweet and the whole message pops up and you click send!

    Don’t forget to put #endo at the end of all twitter messages. Let me know your twitter name so I can follow you. That’ll help us get connected!!

    It’s awesome!

    Let me know if you get stuck! 🙂

    Jeanne

    P.S. Trust me, my appearance of high energy is deceiving. Hoping to make video # 3 tonight if I can summon the energy!! Stay tuned! I plan to talk about more than just endo. I plan to discuss one of my FAVORITE topics: ACUPUNCTURE! 🙂 Don’t miss it. (Hope to film it tonight… we’ll see b/c I’m pretty pooped)…

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