Living With A Life Long Disease

How do you deal with knowing the disease you have has no cure? How do you deal with the stigma and misinformation about the disease? How do you deal with the disease affecting and dictating the rest of your health? How do you come to terms with that? I still haven’t.

The disease: endometriosis.

When you hear the word ‘endometriosis’ what do think of? Painful periods? Infertility? It’s so much more than that. Millions of women like myself have to live with this disease and live with the misinformation of it.

It’s the debilitating pain, surgeries, medication, other health issues and emotional issues. It’s feeling tired a lot of the time, it’s having vitamin deficiencies, it’s having bowel and digestion problems, it’s feeling run down, it’s feeling like absolute shit, it’s crying and getting upset over little things, it’s not being able to do basic tasks, it’s the increased risk of certain cancers, it’s the increased risk of developing autoimmune diseases, it’s fertility issues and infertility, it’s losing part or complete organs. It’s knowing that your body can produce growths at any time, everywhere and all you can do is live on medication and have surgery.

Did you know that your body can grow the endometriosis in your pelvis, bowel, brain, lungs and basically anywhere else in your body that it wants to? No, it’s not just a pelvic issue.

When you live with a life long disease that carries the characteristics of an autoimmune disease, there is no “it could be worse” moment. Don’t let anyone tell you that you could be worse off. There is no cure, and you have to be constantly aware of your body and symptoms. This means putting yourself and your health first, not running yourself into the ground with stress and overworking yourself.

I spent 9 years in horrible pain before any medical professional listened to me and actually investigated what was going on. Do you know what it feels like being treated like a hypochondriac by a doctor? It hurts. But knowing that I lived for so long in horrid pain makes me feel strong to a degree, that I never gave up pushing for answers and that I did all I could before I got my answers.

PSA: if you think there’s something not right, keep pushing until you get answers.

I get tired remarkably easy, so days I don’t have to do anything Important I usually sleep in. Which to those who don’t understand, looks lazy or becomes a joke. I get upset easily because I’m tired, which in turn is because my body is fighting this disease, so I look over dramatic and emotional. I have trouble digesting some foods and I have bowel problems, thanks to this disease. I have a chronic B12 deficiency because of this disease. I can’t control any of this.

It’s really hard coming to terms with this disease. Really hard.

As we begin this month, we raise awareness for this horrid disease by raising money for a cure. I can proudly say that our government here in Australia has put money to research and acknowledged it as being a genuine disease that costs us our livelihood. You can help me and other women by clicking here to donate to this cause. 🎗


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