When you have a chronic illness you are acutely aware of how you sound to other people. When people ask how you are feeling, you can either lie and make them feel comfortable or tell the truth and make them uncomfortable. Let's face it, no one wants to constantly hear that you are sick and not getting any better. Even the most well-meaning people can get frustrated with you. When you have a chronic illness very few people understand what it entails, and it is different for every person who suffers.
educate themselves and aren't scared off by your truly bad days are essential. In this day and age we are also lucky to have on-line communities to join. On those really tough days when all you can do is cry, take your pain meds and stay in bed, the internet is our only connection to the real world. I have found a lot of hope, humor, and comfort in facebook groups. I only have one real-world friend who has a chronic illness, so being able to chat with on-line friends and compare therapies, talk about medicine, and just feel accepted is important to me.
Chronic illness is a large part of my personal identity, and so I share my thoughts about it frequently. I'm not shy, and part of me hopes that talking about the things that are important to me (special education, autism, atheism, fibromyalgia & arthritis) will spur conversation. But, when you put your thoughts on display, there are always those who don't understand or may disagree with you. I fully expect to ruffle feathers when I talk about atheism, and sometimes when I talk about autism, but it is a shock when people get down on me for talking about chronic illness.
There are many misguided things that you can say to people with chronic illness, including:
It's all in your head
You're just depressed
If you would just exercise more/eat better/take supplements
Quit being so negative
I wish I could stay at home like you
Why do you take so much medicine?
You have to cancel our plans again?!
Just stop complaining
You just want attention
There are people who are worse off than you
Most of these statements probably come from a place of good intent. Probably. Some people think that a little 'tough love' is good for someone who seems to constantly complain. For the most part, though, if you have not lived with a chronic illness, or been very close to someone who has, you really have no idea what it entails. As humans, we tend to view the world through our own special lens, and the resulting lack of empathy is concerning. This is even more apparent in the on-line world, where many people feel perfectly comfortable yelling things at others that they would never say to them in person.
Those of us with problems know that it sucks always feeling
crappy because we are the ones living it! I don't remember what it
feels like to be pain-free and have enough energy to live a normal life.
I desperately wish that I did. It kills me that my five year-old
daughter asks me what prescriptions I
need to get every time we drive past the damn pharmacy. It hurts that whenever she pretends to be mommy she says that she is tired and needs to
lay down. The emotional demons that are spawned from chronic illness and
pain are tough to handle. How would you feel if you knew that your
quality of life, and even your life expectancy, would be significantly
less because of your disease and the medicine that you take to control
it? Dealing with these things is hard enough without "friends" and
family getting down on you, too. Like I said, I am all for having conversations, but when statements like the ones above get thrown around, the dialogue has ended. I do my best to put on a happy face every single day and hide how I am
feeling. After being told to 'quit being so negative' I decided that I'd had enough. As Peter Finch said in Network "I'm mad as hell and I'm not gonna take it anymore!". Chronic illness/pain was not a choice that anyone made and it is not the way we want to live our lives, but we are stuck with it, and if venting on facebook makes it just a little more bearable then who the hell are you to tell us to stop complaining? So, if you really want to know how my life is going, please ask. But if you are not prepared for whatever answer I give you, then just keep it to yourself.