Posted by: thedianestory | March 23, 2015

The Stigma

  

This week’s link-up for Endometriosis Awareness Month is “If there is one thing I could change about the stigma of Endo, it would be…”.


The stigma I’d like to see changed is that Endometriosis is all in our heads. Often, because our illness isn’t visible, people somehow think that we are making up the severity of our symptoms. They think that our symptoms are just “severe PMS” or “terrible cramps.” Therefore the assumption is that those of us that are literally crippled from our pain, are somehow making up the symptoms. I am truly “Sick of It.” Sick of people thinking I am making up my issues from Endometriosis. Sick of people insinuating that I am using my illness as an excuse to get out of commitments in life. And sick of people talking about me and my illness behind my back.

I truly, truly wish that this stigma of Endometriosis not being a real, viable disease would end. I want nothing more in life than to be able to live with no pain, have a family, work full-time in my dream job of teaching, and becoming a mom who could actually feel well enough to be with my kids on every adventure. Trust me when I say that this disease is real. Just because you can’t see it, does NOT mean that it doesn’t exist.

I am excited to announce that this week’s linkup post also includes a giveaway! One of our business sponsors, Seaview Jewellery, has graciously donated a beautiful necklace and charms to give away to you awesome folks! The charms can be put on a keychain or zipper pull as well as a variety of other places. This week there will be 3 winners (one will win the necklace and two others will win charms). Look at these beautiful creations:

  

 

 

 

 

To enter the giveaway, leave a comment telling me what stigma about endometriosis (or chronic illness in general) that you would like to see changed (mandatory)!

For an extra entry, tweet this post and then leave a comment letting me know that you did with a link to your tweet!

This giveaway will run through Friday, March 27th! You can also visit Jamee’s blog for additional giveaways courtesy of Seaview Jewellery! Next week’s linkup will also feature endometriosis awareness jewelry giveaways courtesy of Seaview and our other business sponsor FJJ Creations!

Don’t forget to link-up your blog post this week over on Jamee’s post via Mr.Linky! 

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Responses

  1. Although my cronic illness does not debilitate me from most of my everyday life I still constantly suffer with what it has done to my body. My major thyroid issues that took years to diagnose and properly medicate have left me with 60 pounds. I now have to struggle to shed, which is hard when I am positive I have PCOS. Still cannot get a diagnosis from the Dr or any treatment to help those symptoms.

  2. Hi, sweetie. I know all too well your pain and symptoms are real, as well as the cost of this disease to your dreams and health.
    My chronic illness has debilitated me to the point I can’t even keep up with friendships these days, much less work for wages. People just don’t get it. When I say I am so exhausted I can’t even talk on the phone, if I push it, I get so ill it can last 3 weeks of not being able to do anything. That means cancelling doctor appointments for this entire household, as well as keeping groceries in the house. cooking? Forget it! It is more rare than ever, and as you know I love to feed people!
    My weight has increased along with this, as exercise ups my heart rate and there we go! Plus, when I don’t do the cooking myself, it just isn’t the quality of food and diet I would do.
    Biggest frustration? People who see how ill I am, tell me on “bad” days they are afraid for me, then turn around and manipulate me with guilt to try to get me to run errands for them, miss sleep to stay up with them, etc. sigh!
    It is hard to not be “normal” enough to be respected, and for the doctors to say it is real, then treat you like you are mentally ill and faking it.
    Thank God for God in my life! And for friends who do get it.
    Love you, missy!

    • Thanks Shelley. I love you so much. Hope we can see each other soon! Did you say we should cook a four course meal and eat and chat and then clean up?! Lol Forget. La Comida it is. Hahahaha. Love ya. Thanks for commenting and sharing!

  3. One thing that bothers me is… People saying that fibromyalgia isn’t a real disease. I have heard that so many times and it is frustrating when I can feel the pain every day. I choose to trust my Lord and carry on. The Lord is the one who gives me the strength to get through each day.

    • Hannah…I feel your pain. I often wish people could experience just one day in our shoes. Even while I lay here trying for sleep, pain is shooting thru my legs keeping me awake. But I “look” fine. It’s frustrating. So glad we have our Lord to carry us through. You are a shining light, and I’m so glad to have “met” you. It’s nice to have people to give/get support from. Together we are stronger, as sisters in Christ. 💜

  4. Tweeted your post here: https://twitter.com/1Lifebeatislove/status/581404754254831617

    The spoons are so great! I tend to forget the spoon image of energy and strength for the day.

  5. If I could change one thing about Invisible Chronic Illness, it would be the way that doctors treat us as patients. Most of us have to see many specialists because our main illness is never just “one” single issue. It affects many areas of our body – physically, mentally, and emotionally. And SO many doctors have no compassion or empathy, or if we have a real symptom that they haven’t read about in med school, they either ignore it or act like we’re making it up. I truly wish that every doctor had to experience some kind of chronic illness in order to truly understand us as patients! We need doctors who aren’t afraid to advocate for us and help us through the process which is never instantly or automatically fixed!

    • Amen Melissa. Amen.

  6. Hi Diane,
    I know that you suffer. I remember in high school we always spend a good amount of time in the nurses office. With my disease people cannot tell from the outside. Changes in my sugars effect ever moment of my life from my attitude to how I feel. I would like people to focus on type 1 diabetes instead of always talking about type 2. You don’t hear much about type 1. When people know I have diabetes they reply with “well your not overweight… Why do you have it?” I then have to tell them that I have juvenile diabetes and they say ” what is that?” The awareness for this genetic chronic disease is not talked about enough. I would like to see that change. Maybe have more support groups for these families that find out their child has type 1 diabetes. Take care Diane.
    Hugs,
    Miranda

    • Miranda. You are such a sweetie. I appreciate our friendship. And I think you are amazing. You are persevering and achieving greatness. I admire that.

  7. With my Chronic Illness (Ulcerative Colitis) people sometimes will say oh I had that one time I hope it goes away for you too soon. NO it doesn’t go away I will have it for the rest of my life. They don’t know all the facts and often think it is an illness like the flu! You get it for a few days and then boom it is gone! You are all better! Nope there is NO CURE! I get pain, fatigue, weight loss. higher chances of colon cancer! So much!

    • Jenny, it’s so frustrating when people act like they can relate, when really, they have no clue. With my Endo, people say “ya sometimes I get cramps so bad that I lay in bed for a day….” Umm. Ya. Lol

  8. Another thing is how people think since you may “look” okay then you are feeling fine and can do more than you are doing! You may look okay on the inside but feel like you are dying on that outside! People would often say Gosh I wish I could be like you and be so skinny (but yay I finally gained weight) It is hard for me to gain weight)

    • Yep. Exactly. Cause our world is so awesome. Lol. I hate it when people say “you’re so lucky not to have to work (though now I am working part time) and get to stay home!” Right…cause I really wanted to be twenty and thirty-something and not live my life-long dream of teaching. Ugh. Yep. So much people don’t get.

      • Oh man I hate it when people are so rude and they have no idea how much effort I have to put into just getting ready and actually GETTING OUT somewhere!! I get that not everyone would know that so I kindly explain it to them- but there are some people who think I should keep doing more and if I can’t do as much as everyone else they think I’m lazy. I hate that- I’m actually doing everything I can to just be there!


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