Thursday, July 19, 2012

Silent and Invisible

When something is part of you, you tend to live and breath it because it has over taken you and your life. I am quite sure that this is usually not the choice when it comes to things like diseases. It is just something you have to learn to deal with. Sometimes it is something that folks know very little about because it's either it's a little know about disease or it's a silent/invisible disease (like Lupus, Polycystic Ovarian Syndrome (PCOS), Lyme Disease, Fibromyalgia, and Endometriosis.... just a few for example), I like to call these the "You look and act fine, so you must not be that sick disease". Being open about your disease is a part of you, in hopes that someone else who might also be suffering will know that they are not alone and/or that it will bring more awareness to the disease. Just because you can't see it, feel it, taste it, touch it, hear it, or smell it doesn't mean it doesn't exist. Yes, I might go on about it and you are tired of hearing about it, but have you ever really taken the time to research and understand what it is like to walk in my shoes and deal with what I have to deal with on a daily basis. I have a dear friend who has Lupus and when we first started hanging out, I often found my feelings hurt because I didn't understand why she would cancel get togethers/outtings at the last minute. I truly thought it was me and she just didn't know how to tell me she didn't want to be my friend after all. Then one day, I choose to finally look past me and research what Lupus really was (after all this was the reason I was always hearing when things were canceled, my Lupus is flaring up today). Guess what? Once I took the time out of my busy day/schedule to learn more about Lupus, I finally began to understand what she dealt with and that she probably didn't enjoy having to call her friends up and cancel on them, that she was suffering. I couldn't see it because to me she looked normal, healthy! But she wasn't her disease is invisible to the naked eye, her body was attacking itself and causing her great pain and discomfort. It's hard for her to get folks to understand this. Once I did though, I was able to be a supportive and understanding friend. I was able to say "It's okay, we'll reschedule when your feeling better or let's just hang out at home and play a game so we can still spend time together if you feel up to it". I learned to adjust according to her needs. She is a dear friend still to this day (14 yrs later). The Lupus has started to show it's toll on her body, it breaks my heart to know and see how much she has been through in all the time that I have known her. I would give anything to switch places with her. She is an inspiration to me and very dear to my whole family. I honestly don't think that if I hadn't taken the time to become knowledgeable about her disease, we wouldn't be the friends that we are today.
My disease is like hers, hard to understand because it's invisible/silent. I look okay on the outside, a little overweight but healthy for the most part. You can't see what lies within, so for you it might be hard to hear constantly how sick I really am. You probably think I am a hypochondriac, someone who just wants or thinks that they need attention. You don't understand that I feel broken as a woman, especially when you see (or know) that I have a child. My child being an only child isn't by choice, it's not what I had planned or wanted, it's what I was given. Yes, I know how blessed I am because I know that there are women who also have my disease who will never, ever know the joys of pregnancy, childbirth or even looking into a face that has some of their features. My heart breaks for these women because even though I was blessed with a child of my own, I still know their pain and have walked in their shoes for 10 years. I never thought I would have a child, that I would never know motherhood. You have heard of my struggles to have another child and probably don't understand why it's such a big issue to me. My child doesn't know the joys of siblings and all that having a sibling means. When my DH and I leave this earth, he'll be all alone. He'll have no one to share his memories of childhood or his parents with. It saddens my heart to think of him with no one who knows the same silly inside family jokes that he does or to help him remember certain family events. He'll be on his own and because of that I have had nothing but the desire to give him the one thing I can't seem to be able to give him. I know what you are thinking because I hear it so often, "Why not adopt" or "You could always adopt". Adoption isn't an option for everyone for various reasons. 
I say all this to say this one thing: Do not judge, ignore, or become frustrated with your friends/family or even strangers when they say they are sick but look "healthy". Take the time to learn about what they have. It just might open your eyes to how they truly are sick and not just a complaining hypochondriac, and how their disease consumes so much of their lives even when they fight against letting that happen every day of their lives. 

3 comments:

  1. My prayers are always with you and you have a great family. Stay strong...

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  2. very very well said. Thanks for sharing. I want to share this

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