I just want to preface this post by saying that I know it will be hard for a lot of people to listen to. Not in the “sad, difficult, bring up past hurts” way, but in the “I’m not like that, this is for someone else” way. So, let me start by saying, no, it’s for you. Especially the many “you’s” in my life who are affected by long term invisible diseases.
My oldest child is a 13 year old girl, she is athletic, smart, responsible, and hysterical in a sneaky sarcastic way that I can’t help but be proud of. She has always seemed to have the things that are hard for her father and me come easily to her. She is also my stress ball, she is a perfectionist who tends to take everything to the extreme. I have had to ground her from doing homework, no joke, I never thought that would happen. The final thing, the new thing that defines her, is her autoimmune disorder. This is also something that I never thought would happen.
My best friend is a , umm, lets go with woman of undisclosed age. She is smart, musically talented in a million ways, full of the ability to stand up for herself and those around her in ways I could never dream of. She has had a life full of things to overcome, but she has lived through them and come out the other side an even more amazing person than before. She has been there for me through almost every personal tragedy and triumph and alternately protected, and pushed me as I needed it. She is a perfectionist who tends to take everything to the extreme, and while I can’t exactly ground her, I’ve done my best to reign her in when she needed it. The final thing that defines her is her disorders. This is something that I also never thought would happen.
As the mother of and best friend to two amazingly talented, overachievers who have been diagnosed with debilitating invisible diseases this post will talk about one of the things that I see most often in each of them individually, that they seem to be the most unaware of. They will both push themselves to the breaking point, through pain, disease, and common sense, just to finish something in the way they think that it should be finished.
An example: my daughter was given an assignment to write a fiction short story of the “hero’s quest” variety. When she asked her teacher for the length it should be, he told her to write until the story was over. That’s a good direction for most students, it keeps them from concentrating on length and lets the story flow. For my student, it was the start of an epic tale. Her rough draft was 70+ handwritten pages in her teeny tiny handwriting, and this was only to the climax of the story. When it came time to type the story up, she edited with a vengeance, cutting out huge swaths of the story, and still ended up with 30+ pages typed. By the time she was on the final draft we were at almost 40 pages, with narrow margins, in 10 point font. There were late nights, early mornings, missed meals, stress, exhaustion, yelling, and crying. The other student in class who was the closest to her was at four pages…4.
This is only one example, out of millions I could come up with for both of them, where they put their health and well-being on the backburner to take care of something that they felt was paramount. Jo got sick in this instance, and in many others. Her body and mind had been pushed past the point where it could recover on its own. She went back on the strong medication, very strict diet, and more frequent labs. All for the sake of a story that she didn’t need to make quite so epic.
While I was visiting my best friend the other week, she observed my daughter running herself into the ground and sat her down for a serious talk about making sure to care for your body, and listen to it, it’s all you have so don’t make it worse. Then two days later, she spent the day out and about with us, pushed too hard, and ended up in bed. Did I enjoy our time out together? Absolutely, it is one of the memories I will cherish. Is this memory more important to me than her health? No. Never. I’d rather have her do less and be okay rather than do all that she thinks that she “should” and be hurting so badly.
So to everyone who reads this who is dealing with something that is so easily affected by the way they take care of themselves, please know the people around you who love you want you to take care of yourself. We want you to feel comfortable enough to be able to say, I can’t do that today.
For those of you who are reading this because you support someone who deals with these issues on a day to day basis, stop pushing them. Seriously, when they tell you that they don’t feel well enough to do something, let them not do it. Trust them to know their body better than you do, trust that they want to do all of the things, but that they can’t right now. Quit adding guilt to an already frustrated and beaten down system. If you are already not pushing, then start helping them make good decisions, offer to help frequently, but don’t shove them into the life of an invalid with your help. It’s a fine line to walk, but an important one.
To every single person reading this, know that no matter what you have the right and the responsibility to listen to your body and do only what you can when you can. Take care of yourself, this is the only body you have.
Eat! The food that fuels you in the right way, not the food that tastes good but doesn’t help your body do it’s job.
Drink! Water, juice, or electrolytes, or whatever makes you take some liquid into your body. As much as it pains me to say this, coffee by the pot really isn’t what you’re needing.
Rest, frequently and before you start to feel exhausted, by the time you feel it, you’ve gone too far.