Why my Holiday wish list looks different than yours

It’s time for most of everyone’s favorite time of the year right? Time to go shopping for some gifts, travel to see family and friends, cook big meals and hey….maybe squeeze a race or two in there. I know there are A LOT of ugly Christmas sweater fun runs out there!

But while some of you may be asking for the latest Garmin, or those amazing looking asics that just came out…my wish list is a little different. Here is what my 2016 Holiday wish list is:holidaywishbanner2015-1

1.- Having invisible illnesses is serious. It’s painful, and most of it is an everyday thing so I wish people would take us serious when we say we are ALWAYS in pain even if we “may not look like it.”

2.- When our friends ask me how we are doing and we answer with “OK” we do have our own reasons. Mine is to avoid an awkward explanation of how much pain I am in and putting you all in an uncomfortable position of not knowing how to respond and to help me out. I wish our friends understood that.

3.- If you are sick and tired of hearing me talk about all the pain I go through, imagine what it’s like living with it each day. Yes, I do talk about it a lot to help support, motivate, and inspire others..but did you ever think that it was helping me vent? I wish people would be a little more understanding with someone who suffers with chronic pain.

4.- Every day is a battle. Some days are worse than others. I am good at hiding it and sometimes end up making those days look “easier”. You read about those “easier” days on my social media posts because I let you all know about the good the bad and the ugly. But sometimes, to those who don’t know you…that’s what ends up happening. I wish people could see how much strength we really do have.

5.- I don’t do it for attention or for pity, I share it to spread awareness and so people with invisible and chronic illness have a voice. It’s already a hard life to live, no need to make it tougher because others don’t understand. I wish others could see that it is a real disease.

6.- There are days where I could be fine in the morning and take a drastic turn for the worst in the afternoon into the evening. I can never predict what my illnesses are going to do. It makes it tough to make plans, go to dinner, or hang out. I wish my chronic pain wasn’t so sneaky.

7.- Chronic pain never goes, you just make room for it. You can try to ignore it but it won’t go away. If you look it up the definition is: persisting for a long time or constantly recurring. I wish for at least ONE day that I did have pain.

8.- With all the things that I have been through, and having my first spinal fusion in my early teen years, many have said “But you’re so young to be going through all of this.” Since when did chronic illness have an age? I have to be 89 years old to have chronic pain? I may feel like I am 89 on the inside but I don’t look like it on the outside. I wish people would stop telling me, “You are too young to be going through all of this, something must be wrong.”

9.- When I do actually tell someone that I know how awful I am feeling or how painful my days have been, they respond with, “But you look good though.” That definitely doesn’t help. It makes me feel worse. Just don’t. I wish people actually took the time to actually listen and be supportive.

10.- My little but strong family is my rock. My husband has retained his Military soldier strength and thankfully passed it onto our son. But I don’t like that he seems he suffer. But he is a great little nurse and brings me anything I need like ice packs and heating pads and such whenever I can’t get up. He see what I go through but he also sees what I fight through to keep going. So he sees the good and the bad. He does worry and always ask me how’s your fibromyalgia today? and the Scoliosis? and how’s the swelling in your brain? Metaphorically, he sees me fall, but also sees me get back up. I wish my son didn’t see me suffer so much.

These would be all the “gifts” I would love to be waiting for me under my Christmas tree on Christmas morning as some of these would be priceless and one in a lifetime. But as all chronic pain suffers and invisible illness fighters do, we are dreamers and we wish, we wish on star…

(Was also published on THE MIGHTY)








2 responses to “Why my Holiday wish list looks different than yours”

  1. nursesnotions Avatar

    I think people who misunderstand us (people with chronic health conditions/pain) view us as seeking pity, but they don’t realize that we go through much more than they realize. We need to vent out our emotions, but at the same time educate and provide awareness as to what we’re going through. Keep writing and keep spreading awareness!

  2. Jillian Avatar

    Yes yes and YES!
    These are truly gifts. I wish more people possessed these gifts so we could fully share how hard some days are, and how much harder the other days are.
    Thank you for sharing your life with us, you let us know that we are not alone, I just hope we do enough to let you know you are not alone either!

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