Invisible Illness Awareness Week is right around the corner. It is the week of September 28th through October 4. It was started by Lisa Copen of Rest Ministries many years ago who deals with fibromyalgia and severe arthritis. The theme is Invisible Fight. I think that’s a great name for the theme. I do feel like it’s an invisible fight at times. People can’t tell what you’re going through by looking at you. It can be a daily struggle dealing with so many symptoms. I wanted to give you a look into my life with fibromyalgia. I know for me, there are so many things I want to do, but my body just won’t cooperate.
I have fibromyalgia and chronic fatigue syndrome. They are very similar. I have had them for over twenty years. If you would like to learn more about my journey you can visit my about page .
Here are some of the things that are difficult for me that I deal with on a daily basis:
Not being able to plan ahead: The thing that’s the hardest for me to deal with is not being able to plan things ahead of time. When someone invites me to do something, or would like me to do something for them, I constantly have to tell them I can’t let them know until that day. I know this drives my family nuts sometimes. They try to be understanding, but I feel bad that it effects their life so much. It also makes it hard to plan anything that involves me having to drive anywhere. On days when I have extreme fatigue I don’t feel safe getting behind the wheel. That makes it hard to visit relatives or even plan doctor’s appointments that might far away.
Not being able to work full time: I got sick shortly after I got married, at the age of twenty-three. I had only been out of college for a year. I had a teaching degree, but only had part time jobs like subbing etc. Since becoming ill I have never been able to hold down a full time job. My fatigue is my most troublesome symptom. It can be overwhelming at times. When I come home from a part time job I usually have to take a nap before my son comes home from school. Having a chronic illness can be quite expensive too. There are doctor visits, medications, and supplements. We have good insurance which I’m grateful for, but it doesn’t cover alternative treatments and supplements, which can add up quickly. It can be hard to get the optimum care you need if you’re not working full time.
It’s hard to keep up with the house: We have a three story house which can be time consuming and tiring just trying to keep up with the basics. My daughter tried to help when she could which was a great blessing, but now she’s in college. My son helps with some things, but he also makes messes even as a teenager! I hope one day we can move into a smaller house to make things a bit easier.
It’s hard to maintain friendships: I have a group of good friends that I do get to see from time to time, but not as often as I would like. I sometimes feel like I’m missing out. This may sound like someone who’s in jr. high, but at times I see my friends getting together, and posting these wonderful pictures on Facebook. I sometimes wonder why I wasn’t invited to some of them. I also think to myself, if I was invited would I have been able to attend? I feel like there is a whole world out there I am missing.
It’s harder to parent: My kids are now teenagers, so in some ways it has gotten a bit easier because they’re more independent. They can do bigger chores and clean up after themselves. When they were little I had to drive them to recitals, practices, story time and lessons. I can remember them wanting me to take them to the park and me needing to say no once in awhile. It broke my heart to see the looks of disappointment on their faces. I feel bad now when I have had to occasionally miss open houses, etc. Even though they have had to miss out on a few things I think they have learned valuable lessons, such as empathy, delayed gratification, and helping one another.
It’s harder to do things like grocery shop, etc.: I try and pace myself when I have errands to run. I’m thankful that if I’m not feeling up to it my husband will usually stop at the store on his way home from work. If I’m having an especially good day then I try and make a few stops that are close by.
Even though I deal with daily struggles I am so thankful for the many blessings that I have, like a supportive family and good friends. I know that I am still worth something. The world makes us think that our worth is linked to our productivity. I’m so glad that’s not true! I am worth something because I am a child of God made in his image. He can use me no matter what my limitations are. One other thing I have come to learn is that we all have limitations and daily struggles even if we don’t have an illness. They may just look different.
I hope you will go over to the Invisible Illness Awareness website and take a look at all the articles and encouragement. Remember you are special just the way you are!