Chronic Illness & Endometriosis Health

Family Just Doesn’t Understand

It is going on almost three weeks now that this lapse has been occurring and I am exhausted. I have spent so much time diving into the world of endometriosis again, the first go around, I was young – I went through the process but did not experience it. I was in college. I was in pain. Yet, it feels different somehow. The episode seems like it was shorter. The pain does not seem like it was that bad – in hindsight. Maybe it was, though. I do remember missing a lot of school. I remember being miserable. Yet, I had medicine. I had doctors working to get a resolution.  And, I was not thinking about children.

Now, the pain does not seem to let up at all. I am miserable. I force myself to be cheerful and pleasant at work, at home, around family. Thankfully, though, our life is relatively secluded. We are not invited to many things with our family anymore. Yet, when we are I do feel the pressure to put on my “happy face”. The same when I am at work. Unless, I am with my good friends who understand what I am going through.

Invisible Illness Worst Thing to say

In reading through some other posts, I remember seeing people complain about people not understanding their pain, being dismissive, or just insensitive. Honestly, until this week, I always thought you were being too sensitive. Family and friends wouldn’t be intentionally insensitive or dismissive of someone dealing with a chronic pain disease, right? 

WRONG! 

Endometriosis is like a period thing, so like, she should only have pain a week a month, right?”  – Anonymous

“The pain cannot really be THAT bad after two weeks, can it?” – A. Nonymous

Are you serious? If I had a dollar for every time people thought that endometriosis  was a”period thing,” I’d be a millionaire… just kidding, but I could pay my medical bills!

But really, who the hell do you think you are? Why would I lie about my pain? I can see a medical professional questioning the seriousness of my pain, if I was coming for multiple pain medication refills, but I have nothing to gain from others being aware of my illness.  I do not receive special treatment. I still work the same hours. I still use the big girl potty. I’m not asking YOU for anythingIf anything the only reason people know is so that I can explain why I have to bail on extracurricular activities so frequently, or why I may seem extra irritable or tired… or explain why I’m sitting with a heating pad on my lap.

judge-bs

You want to know what endometriosis and chronic pain has done for me?  Well, I have lost friends since I almost never have energy to hang out. I constantly feel guilty that I am holding my husband back from enjoying what he wants to do. I am constantly feeling guilty in general. I had to discuss possible fertility issues with my husband while we were dating, and had sleepless nights leading up to it for fear that he would end the relationship knowing there was a chance that marrying me could mean not having biological children. I have had more gynecological examinations than most people have in a lifetime. It is not fun – modesty is no longer a word in my vocabulary when it comes to doctors office. I actually have used the phrase “The more the merrier” before when being seen at a teaching facility (I was under the influence of a high dosage of morphine at the time).

So little is known about endometriosis in mainstream, though, so how can I blame my family, friends, or co-workers for not understanding this disease? Maybe it is up to me to spread the word in my community about this illness to increase support for research. Doctors do not even know if it is hereditary!  How is it possible that the ONLY way to diagnosis endometriosis definitively is through laparoscopy? Yes, it does make it easier to be able to do an excision surgery at the same time once located, but man, there has to be a less invasive way to diagnosis.

For now, I am blessed to have my husband’s unwavering support. My mother and grandmother. The growing support system I’ve found online through Nancy’s Nook and WP. My two best friends at work. And who could forget my beautiful pup, Toby. With that much support, who wouldn’t get through all of this?

I do not need to prove to the rest that I am sick, or meet their standard of sick to receive their support. I am walking my own journey. This is my path that the Lord has placed before me. They are obstacles placed before me as bait to garner a reaction to make me stumble; however, I will not fall. I will rise above and pray for continued guidance from God to strengthen my heart against these attacks.  He will get all of us through this disease. He is strengthening us for something that will require so much power that he chose us, His strongest!

So, straighten your crowns, queens. Our God is using this pain to strengthen us. queen-power

 

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5 Comment

  1. I love this post! If only those who are healthy could understand the physical and emotional pain having a chronic illness cause us! I’m so happy your husband is so supportive and that you have at least a few people and your fur baby backing you!

  2. I’m a nurse and I’ve always heard other nurses say things like that patient’s pain isn’t really at (insert pain level here) and sometimes I’d honestly be skeptical, especially if they were sitting with a straight face, seemingly normal, but I’d still comfort them and help them with pain management and not treat them like they were liars. I’m a frequent patient, diagnosed with epilepsy (12 years ago) and have been experiencing chronic pain for over two years now, which I thought was related to a rare compression syndrome called Nutcracker Syndrome. Even had surgery for it, however, doesn’t seem like the pain is related at all. Ohhh joy! Anyways, the one thing I got from my health conditions is that it has made me a much better nurse. I don’t judge anyone in pain, because I’ve lived it now. I know one day I can cry at pain when it’s only a 5, if my mental health isn’t there, but be sitting stoned faced when my pain is at an 8. I’ve been questioned by people all the time about my pain. Mostly medical professionals, calling me a liar, saying I’m trying to score drugs (even when I don’t ask for them), however people who don’t even hardly know my situation say things like your pain isn’t really that bad. And your right…what do we have to gain by lying to them? Absolutely nothing? We’re not doing it for attention, we want to be cured, we want to be better, we want nothing more than this pain to stop. We don’t care about a stupid number on the pain scale. We just want the pain to be gone. I mostly, ignore the people’s comments now because I’ve been through so much health wise in my fairly short lifetime that I don’t need or care if they believe. I know my body and I know I need to take care of it and that’s all that matters. I hope you find answers and find relief to your pain.

    1. Thank you so much for your comment. I think you voiced everything I was feeling in a briefer paragraph! I do know I tend to be overly polite and hide how I’m feeling at the hospital. I smile, say please and thank you, and probably don’t “act” as I should for someone who’s in pain.
      I’m working on blocking out the comments, you’d think I’d be good at it by now but I’m still adjusting.

      Best of luck to you, too… This whole process is a long journey with many potholes. As long as you have a support system, you’ll be alright 🙂

      1. Yea just the other day I was in the ER and I was thinking ya know if I was crying in pain, I feel they would’ve kept me there and ran more tests instead discharging me saying I was fine…which because they can’t find anything doesn’t mean I’m fine. It’s definitely frustrating, but yea having a support system really helps. Sure they might not always know exactly what I’m going through, but they’re there and they’re trying to understand. And I’m in support groups online for people diagnosed with some of hte things I have so it helps talking to other people who are going through similiar situations, similar hells as I like to call it. But, even though I know it’s a long process, I feel it’s eventually gotta come to an end. So hopefully we can both find our ends soon. *fingers crossed*

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