For all of my friends and family who also suffer from an “invisible illness, and for the people that love them, a small list of things to help, and not hinder, those of us with Fibromyalgia, Lupus, MS, diabetes, hypertension. Crohn’s Disease, etc. I have heard many sufferers say things like, “I wish everyone could have this for a day,” or “No one knows how awful this is,” and I don’t think anyone needs to have our disease to be empathetic, but some education may help us all get along without hurt feelings.
I think the biggest misinformation comes from the fact that many diseases have more than 20 symptoms, people who have that disease can have any random combination of those symptoms, also different doctors use different medications, so naturally 4 people with the same disease are not identical. If that does not make sense to you think about all the people you know in your same profession, with the same number of children, and how different all of your lives are. There are some standard symptoms, but most vary, I am the only one that I know that lost half my hair for example. So please do not tell us about your neighbor’s daughter, or your hairdresser, or son’s boy scout leader who has the same disease but takes different medications, or is able to hike, or is able to work full time still. There are different levels of severity, and it is not dependent on the length of time a person has had the illness.
Please do not compare one day with another, or berate your friend for sleeping all day, being late, not being able to do fun things, etc. We know our own bodies and what we are capable of, and yes maybe last week we did go out for your birthday and dance and have a few drinks, then go shopping the next day and out to the movies. This week I may leave my house only once to get the mail or the store, it really varies day to day and sometimes hour to hour. I can tell you right now we already feel guilty and sad about things we are physically unable to do.
Help us to celebrate, don’t laugh at us if we are excited we walked a half mile today, or were able to tie our own shoes. We need to be able to laugh at ourselves, and some of us hang onto our faith very tightly. It’s always nice to be told you look good, as long as you realize that doesn’t really mean anything, ever since my medications have been right for me I look the same, except I get acne like sores on my face that are not acne, I have occasional days where I really look sick, but most of the time I look like I have always looked, or at least I like to think so!
There may be times we need a little help, we don’t always like to ask, please try if you can. Conversely, often we may seem to need help but we really need to do it on our own, I am often this way about standing up from a chair, I worked in long term care for many years and will tell my daughter, “Go get me the lift!” Some days it’s harder than others, I may have to roll onto the floor and crawl until I find something stable and steady enough to help me up, this never fails to freak my son out and he wants me to go back to the doctor, they can’t fix that, I just had to learn to live with it, please don’t watch me crawl on the floor and feel sorry for me. I don’t need your pity, I would like some empathy if you can. I think we would all like to keep your love and friendship.
Above all, just be a friend, treat us the way you would like to be treated if it happened to you. Don’t feel sorry for us, and don’t be scared of us. Most of us, by necessity, have become experts in our own diseases, feel free to ask us. We would much rather explain a few things to you than have you discuss it with your friend who also knows someone with the same disease and how different we are, thank you. Thank you for your love, compassion, empathy, and for caring enough to learn with us.
About the author:
MamaSteph has 2 kids by birth and several by love, she is a nurse and enjoys finding healthier ways to make comfort foods, gardening, enjoying nature, and living life to the fullest…For a list of her blogs please click here.
