Change is Hard, Life is Hard
Last updated: August 2022
I have 2 boys that went back to school this morning, starting 2nd and 5th grade. They were nervous and excited at the same time, just like their momma. I have the pleasure of staying home with them, which makes for long days, but at the end of them I wouldn’t trade it for the world. Some days my husband definitely thinks I could run away and never look back, some days I think this too. Life is hard for everyone, but life is exponentially harder for someone with a chronic illness.
Don't ask me how I'm doing and then invalidate my answer please
I have never been one to open up much, but I have gotten better through the years about at least trying to tell people how I feel or how I’m doing. One of my biggest complaints, I guess you could say, is when someone asks me how I’m doing but then completely dismisses whatever I say and then let me know how they feel or how they’re doing. Wow, the nerve of some people, right?! I know that’s what you’re thinking, but it’s not the joint sharing of issues or problems that’s my issue. My issue is feeling like I was only asked so they could go into detail about their problems. I love hearing other people's problems as much as the next guy, but I also like to feel like I’m heard and seen. I’m sure most people do this without even thinking, but I can promise you, it drives people with chronic illness absolutely nuts. My husband is such a glass-half-full person, he always helps me to see things from someone else’s point of view, and I’m so thankful for that. He is empathetic and always assumes everyone else is that way as well. I have improved some, but I’m not the most empathetic person. It’s not because I don’t care about people, I do and I really do want to hear all about your issues, as long as you’re able to do the same for me.
I wish it was as easy as getting a good night's sleep to feel better
Sometimes it feels like when I open up and tell someone an issue I’ve been having and their first response is “oh yeah I had a rough night too and my back has been killing me,” they’re not being empathetic or attempting to connect with me at all. I’m sure it’s some sort of psychological thing but I don’t give a shit. Your problems probably aren’t the same as mine, I mean for one mine is chronic and that means forever. No matter what I do or eat or don’t do or don’t eat, it’s never going away. NEVER!! If your back hurts because you slept wrong, you’ll probably get a good nights sleep tonight and be all better. I wish a good nights sleep, doing yoga, eating all the veggies and cold water baths would cure me. I wish!! Maybe that’s why I can’t stand a complainer, because if your situation could be changed or different simply by exercising, eating better, and taking care of your self then we are nothing alike. There is no connection when I feel like I have to prove how sick I am and then listen to how bad you feel when only one of us can change our story.
Please just show some compassion and care
I feel like I kill myself trying to do better and be better. I try not to complain, I know everyone has their own problems and no one really wants to hear about what I go through on a daily basis and my answer of “how are you” never change. When you do ask me how I am, ask it sincerely. Otherwise don’t ask. I promise it’ll hurt my feelings less if I know you don’t care than when you pretend to care but nothing changes. I don’t expect you to get it, I just expect you to show compassion and truly care when you ask how I’m doing and you expect me to tell you the truth. Living is hard, living with a chronic illness in a self absorbed world feels impossible.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: