The Mighty Logo

What a Holiday Wish List Looks Like for Someone With Chronic Pain

It’s time for nearly everyone’s favorite time of the year, right? Time to go shopping for some gifts, travel to see family and friends and maybe cook big meals. But while some of you may be asking for the latest cool gadgets or those amazing new boots…my wish list is a little different. Here is what my 2016 holiday wish list includes:

1. Having invisible illnesses is serious. It’s painful and mostly an everyday thing, so I wish people would take me seriously when I say I am always in pain – even if I may not look like it.

2. When my friends ask me how I’m doing and I simply answer, “OK,” I have my reasons. I am trying to avoid an awkward explanation of how much pain I am in, putting you all in an uncomfortable position of not knowing how to respond or help me out. I wish my 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 consider it was also helping me vent? I wish people would be a little more understanding with someone who struggles 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.” I wish people could see how much strength it really does take.

5. I don’t talk about my illness for attention or for pity; I share it to spread awareness and to give people with invisible and chronic illnesses a voice. It’s already a hard life to live – there’s no need to make it tougher with a lack of understanding. I wish others could see it is a real disease.

6. There are days when I could be fine in the morning and take a drastic turn for the worse in the afternoon and 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 away – you just make room for it. You can try to ignore it but it won’t leave. If you look up the definition, “chronic” means “persisting for a long time or constantly recurring.” I wish for at least one day of no pain.

8. With all the things I have been through, including 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? Do 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 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 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 to struggle. He is a great nurse and brings me anything I need like ice packs, heating pads and such whenever I can’t get up. He sees 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 asks, “How’s your fibromyalgia today? And the scoliosis? And how’s the swelling in your brain?” Metaphorically, he sees me fall, but he also sees me get back up. I wish my son didn’t see me struggle 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. But like all chronic pain and invisible illness fighters, I dream and wish on a star.

We want to hear your story. Become a Mighty contributor here.

Conversations 2