Stand Alone

Life with a disease is full of misconceptions. Life with endometriosis is no exception.

What I have had to do is learn to stand alone.

Over the past few years I've learned that I can't except (or even hope in some cases) that people will understand - or even believe you. If you look fine then all is fine right? It doesn't matter how much pain your in, or little do they know the only physical activity that they see you doing is actually all that you are able to do for the entire day - or sometimes even the week. But my facial colour is good - I'm not pale or "sickly" - so what's the problem? "Just get over it." Being told that I could eat "normal" if I wanted to. Sure, I could eat all the junk I want and never have any respite from the pain. Being accused of "hiding away" while the truth is I'm bedridden because of the pain. Longing just to do simple, what should be daily, activities. I can fake it for a little while - show up to gatherings, and such - then go home and be exhausted from the pain. Have to schedule my life around the time when I will guaranteed be bedridden, when my body contracts and I can't believe that I actually live through this every month.

And that's just the physical.

I have to stand even more alone emotionally. But if your reading this, I don't think I need to try and convince you. You know what it's like when your friend get pregnant - again - and you want to be happy for her, but you can't help but weep. To be told you just need to "get over" this too. Oh, people do try to be understanding, at least some of them. But sometimes their "encouraging" comments are much worse and quite hurtful. Endometriosis and infertility itself is a silent issue. No one will think about it when mother's day comes around, except if they take issue when you don't join the festivities. There are no books in the church library. There is everything else (so it seems) from divorce, to cancer, to kidnapped children, or loss of a child. You feel like a part of your womanhood is gone, but you don't know how to express that or what to do. No matter how understanding your husband is, he won't be able to understand this one. But not that he has to.

I have been blessed with a wonderful husband who does in his own way stand by me. He holds my hand (when he can be home) when I'm bawling because of the period pain, or when my cysts burst. He has learned to take me aside privately and give me a big hug when we find out someone is pregnant. Over the years he has tried to convince me that this a "we" issue, not a "me" issue (I still with him good luck with that, it sometimes isn't so convincing). But there are still things that you do  have to go through by yourself - as with all things. No one can feel them for you, and I've learned from experience that bottling them up inside does not help - even if some of those around you have made it clear that they are really not that interested and would rather we didn't let anything show.

I may never find someone who, from experience, know what I am going through. There will always be those many people who don't understand, and would rather you dealt with your problems over there somewhere, out of their way. Then there are those who are just ignorant and try, for better or worse. But I have to remember that I am never actually alone. God tells us that He will never leave us or forsake us. His way is love. And just because people aren't following through on His commandment to love, it is not Him who has let us down.

I'm sure everyone who goes through something life changing, regardless of it's origin, feels alone. That's because on one hand we are. Our lives are so unique that there will never be a single person who goes through exactly what you go through or reacts and feels the same way. And we have to learn to work with that. But on the other hand we are not alone. We may not have physical comforts, it is a blessing if we do, but God is always there. And He is interested in brining us through these hard times.