I wasn’t sure if I should write this post, but I feel like I owe it to the MANY who live silently with their chronic illnesses. “Normal”, healthy people aren’t very interested in this stuff, but PLEASE just take a few minutes to read this so that you have a greater awareness of the THOUSANDS who battle a chronic illness that you may not see on the outside. It’s not my intent to gather sympathy nor is it my intent to speak for everyone. I will just share my little story so that you will perhaps gain some insight and understanding. So here we go…
I won’t go into all of the medical details of what happened to me….the short version is they thought I had MS for a few years until I went to the MAYO Clinic and they decided that it was CFS and Chronic Migraines. But what I will tell you is that no matter what the diagnosis or label of it is, I have spent over 12 years struggling almost daily. I have occasional days that are almost what I vaguely remember as “normal, but for the most part, my new normal is a whole different BEAST!
I wrote a post last week about how there are wonderful gifts to be found in every situation and I totally stand by that! But the reality is also that with a chronic illness that has lasted over 12 years, my life has gone through some changes. I have made peace with these changes for the most part, but it wasn’t always easy.
I think when I first got sick, I spent the first few years concentrating on getting better. Most people do. It’s the natural response. I tried all sorts of doctors, all kinds of medicines, holistic approaches, you name it. And advice came out of the woodwork from everybody! Believe me, if I thought it would help, I either already tried it or it went into the heap of NOPES! Anyway, the harder I tried to get better, the more miserable I became. The reality of some things is just…it is what it is. I’m not a quitter. I’m not against trying something if a good option comes up. But I had to get on with living my life. I had to accept my new normal…..sucky as it was….it was my life. And that felt better than fighting with it all the time. And THAT is when I was able to see the gifts start to appear!
The reality of living with a chronic illness is rough.
- I miss a lot of events. Important ones. I can’t be in big groups or travel in the car when I’m not feeling well.
- I have lost a lot of friends. They get tired of my canceling and rescheduling and my not being able to talk on the phone (talking on the phone makes me sick and gives me a headache).
- I can’t shower sometimes for days. Showering takes a ton of energy go sometimes getting ready to go somewhere takes all of the energy and then I can’t follow through with going out
- It’s almost impossible for me to plan in advance. I don’t know from one day to the next how I will feel.
- People see me in public and think I must be better. The fact is I wouldn’t be in public if I wasn’t feeling decent. The next day I will probably be crashed and look horrible.
- There are people that don’t believe in invisible illness. That is beyond hurtful. I can’t even talk about it!
- People make comments about how nice it must be to be home and not have to work. Kills me! I have been fighting for a way to work from home for years!! I lost my ability to get disability because of my situation in my previous marriage of not working while raising my kids and supporting my then husbands job. Being sick with no income is not fun!
- I mean this with total respect…..but when someone has cancer or is in an accident, people rally around them and their family to support and help them through it. With chronic illness, there are no get well cards, no support, no anything. You are just sick day after day after day. It will not end. It will probably not get better. It more likely will get worse.
Be kind to that person parked in the handicap spot that looks fine. They probably aren’t fine at all. Have compassion for everyone. You have no idea what their battle is.