Each month here at JoJoisms, is going to be question time. Time for JoJo to sit back and read what you all have to say! This is also a time for you all to share your heart and for me to understand more of what my readership needs from me here at JoJoisms. So…
What is the one thing you’d like people to know about your chronic illness? Please share your thoughts in the comments as detailed as you would like to get…or not. 😀 Feel free to rant, but please don’t rave. LOL I know how frustrating chronic illness/pain can be so feel free to share your heart as long as you refrain from language that isn’t Family Friendly, please.
I’m sure there are many others who share your concerns and frustrations. Let’s see if we can share with each other, support one another and learn from each of our stories so we don’t look like Screaming Sheila over there to the left. LOL If we can verbalize what we’d like, sometimes with help and God’s grace we can find a way to get what we need.
What’s the one thing you’d like people to know about your chronic illness? Go!
“Two are better than one; because they have a good reward for their labour. For if they fall, the one will lift up his fellow: but woe to him that is alone when he falleth; for he hath not another to help him up.” -Ecclesiastes 4:9-10 KJV
Wow, so many thoughts right now. If any of this sounds upset, I really don’t mean it that way. I’m being blunt, not bitter. I just want people to know my reality. Here goes:
– I wish people knew that I am not getting better. Maybe someday, Lord willing, or maybe never. When I see them, and they ask, “How are you feeling?” and I say I’m okay, and they respond, “I’m so glad you’re better!” I don’t know what to say. Because I’m not better. I’m just momentarily enjoying more comfort than usual.
– Ignoring my sickness. I think this is because it is uncomfortable for others to acknowledge that I am not normal and don’t feel well, but ignoring the pain or downplaying it or trying to make light of it or couching it all in positive terms makes me feel more alone. I am sorry it makes others uncomfortable, but I can’t change my reality.
– Trying to fix me. Those who are uncomfortable with my illness often try to fix it, diagnose it, cure it, treat it, or pray it away. I am so grateful that they care, but I have so much input from so many people and so many factors that I’m trying to keep straight that I just need space to manage my illness in the way that works best for me.
– It changes constantly. What looks like inconsistency in my choices may simply be due to the fact that I can feel sick one minute and energetic the next, and I have little control over it. So if I turn down the chance to go to a party and then go hiking the next weekend, I’m not snubbing people or using my sickness as an excuse. I’m going with how I’m feeling at the moment.
– I have days of discouragement. Most of the time I’m lying when I say I feel okay, and I’m really good at faking wellness. But on the days when I can’t manage “I’m okay,” I need the space to cry or talk about it or simply lie down and try to cope with my pain. I’m not losing my faith. And I’m not sick because I’m thinking negatively. I’m just tired of being in a constant battle. I’ll come out of it and I’ll smile again. Just stay there with me until I reach the other side of this pain.
There! That’s a good list to start with. 🙂 I’d love to hear what others wish that people knew.
I want people to know that fibro is real even though it can’t be seen. I wish people would ask what fibro pain feels like and how to research it instead of assuming we are lying about being sick
Oh sweet, Yaasha! I soooo agree and you are not being negative or bitter. I think it was very well put. Blessings to you! I identify with every single point you made.
Tanya, you are so right! I feel the same way. It bothers me when people say things like, “my joints ache too or I’m tired too or I didn’t sleep well last night either or I forget things too.” It’s not a one time thing, it’s every moment of every day and it’s not just a tired, it’s exhaustion. Very different kind of pain or memory issues and fatigue than what most people feel.
This is so helpful. I’ve not walked in your shoes We really do need to know what you want and need. Your friends and family often feel helpless to know what to do and so end up doing and saying all the wrong things. The go-to is to try to solve your “problem” by offering suggestions and trying to pretend we know how you feel. Keep telling us. One day we will get it. Meanwhile I thank you for expressing this so well so we can get a clue! Blessings to you. I look forward to reading more!
Thank you, Sharon. It is difficult to share especially when you always feel bad and don’t want to be a downer or have to explain why or why you have already tried doing x, y, or z.