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13 Things People Need to Understand About Spoonie Life

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I’m still trying to figure out at what point people will start to take me seriously. It’s as though everything I have to say is being said by a child, and there are so many around me who constantly question me. “Are you sure?” “What are the odds?” “What if this is happening a different way instead?”

Making matters even more frustrating is the constant barrage of: “Oh you’re too sensitive…” “You cry at everything.” “You just need to toughen up.” “You can’t let it get to you…”

There is a fundamental lack of understanding from the people around me. Just a few of the things which seem to be completely overlooked include:

1. I may not be a doctor, but my research and vigilance saved my own life and could possibly save others down the road. Some of the symptoms of my hormone deficiencies can manifest through my emotions, therefore sometimes when it seems that I’m overly sensitive, or angry, or crying at the drop of a hat, it is partly because my hormones are off balance and there is literally nothing I can do about it. Telling me that I’m “too sensitive” is only going to make things worse.

2. I’m really flipping smart. So chances are pretty good that when I’ve read countless medical journals (yeah, not just Facebook posts from random strangers, though they come into play as well…) I know what I’m talking about. Please don’t question my ability to interpret what I read. And definitely don’t try to tell me that I’m wrong when you haven’t read these same journals. That said, if you’ve also read the journals and I did misinterpret them, discuss it with me. But if you can’t make the time to do the research, do not assume that I did it wrong.

3. I’m exhausted all the time. Like, day two of the nastiest flu you’ve ever had. My body hurts, my brain hurts, I can barely keep my eyes open sometimes. Yet, I’m still expected to function normally. I have kids to feed, a house to clean, things around town and with friends that I want to do, should I have the strength. But those times when I feel like going downtown for an hour to shop with friends should absolutely not be mistaken that I am feeling “good” or healed. Sometimes I fight through the crap so I can enjoy a little bit of normalcy, even if I know I’ll pay for it later.

4. Just because I go out for coffee or something, and laugh and joke, doesn’t mean I feel good. Sometimes I just need to get out of this dark hole that is my world right now and be surrounded by good company. Please don’t make it out to be anything more than a nice time.

5. I am not lazy.

6. I am not lazy.

7. I am not lazy.

8. I want to work. I want to join a Zumba class and hike mountains, and swim across lakes. When someone mentions a desk job, do not respond with “oh, you can do that!” Why? Because I can’t. The amount of energy it takes me to just wake up every morning is overwhelming. Then, I have to get two tiny humans fed and out the door to school, activities, swimming lessons, etc. I still have housework to do on good days, and projects I save for days I think I can push myself a little bit harder, but at no point in time is there ever a day where I know I can be in a place for eight hours, completely focused on what I need to do for a job, and still be able to care for myself at the end of the day. So stop offering help. I cannot work, and your constant “encouragement” to find a job that is “low stress” and sitting down just makes me feel worse about the fact that it is not possible for me right now.

9. I’m doing the best I can. If it isn’t up to your standards, then move on. Don’t judge my children’s Pop-Tart breakfast, or drive-thru donut. I’m literally giving them everything I have on every single day. And if that means I can’t play board games or take them to events, so be it. I also don’t want them to have to sleep over somewhere else because I’ve ended up in the hospital again.

10. Stress can kill me. So please stop arguing with me over silly things, or things you just don’t understand. Don’t come at me with bad news unprepared. Don’t leave me out of things or not tell me things out of trying to “protect” me. Just give me a heads up that there’s a rough conversation ahead, and let me decide how I need to proceed. Don’t assume I can handle 16 different shops just because you can. Ask how I’m doing along the way, and if we need to take a break.

11. Take care of me a little bit. It is really intensely difficult for me to ask for help, so if you plan on helping in some way, just do it. Don’t wait for me to reach out and ask for help – by that point it may be too late. If you’ve offered to help me with laundry and housework, just show up someday and help. If you’ve offered to help take the kids, just do it! Call me the night before, and let’s set something up!

12. If we make plans, please stick to them, or at least cancel the day before (unless you are also battling a chronic illness or have something unforeseen come up that’s beyond your control). The let down from cancelled plans, or not being available when I’m counting on you can cause me to drop into a dangerous situation very quickly. Emotional stress is just as bad for me as physical stress.

13. I don’t like this situation any more than you do. In fact, I hate it a lot more than you do. I wish there were words to describe how I feel. I feel empty, and hopeless, and exhausted. I feel like my body is made of lead and there is nothing I can do to be productive or useful for others around me. I spend a lot of time feeling like I have lost any purpose, or any ability to participate in the world around me, and often wonder what the point is. If I can’t enjoy life, what’s the point. The last thing I need is for other people, who don’t understand this situation at all, to tell me how to live my life, how to react to things, or how to be a better wife, mother, friend, daughter, etc. I just need support.

Photo by Eli DeFaria on Unsplash

Originally published: January 7, 2019
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