When we get sick with an invisible illness the one thing we seek for the most besides someway to help with the pain and other symptoms is support and understanding.
Now there are many ways we think the people in our lives should support us and we get mad at them when they sit there and say, “well if you would…” or “maybe if…”. We hear it all the time, you should get out more. You should exercise more. Maybe if you cut out carb or gluten. Maybe you have this wrong with you. Maybe if you just…. the list literally goes on for miles.
Now it’s easy to understand and support some who got in an accident and is hurt but will mend in the near future. It’s easy because they know what needs to happen to get to the point of recovery. With chronic illness it’s different. There is no one thing that is going to help. Most of the meds that they say are for the illness doesn’t always work. There is not a certain medication that’s helps all who suffer. The painful truth is everyone with a chronic illness suffer differently, yes we all have common symptoms but we are oh so different at the same time.
With all these outside suggestions we get angry and frustrated. Yes we want them to help or understand but we don’t want these suggestions because we know they won’t help.
What we don’t understand is that maybe this is what they need to do to cope with all of this. We are so concerned with how we are doing that we never think of how are our family dealing with this? I know it’s not easy with all we feel and deal with to think how does my family feel? Our family and friends are just as angry and frustrated as we are, because all they want to do is help us. One way they try is to go through all the different may help us. Is it frustrating, yes, is it annoying sometimes, yes, but it is their way of trying to understand and deal with it.
They don’t know for 100% what is going on with us or how any of this feels unless they feel it themselves, they are trying to figure it out. All they want to do is to be able to heal us get better, no, there isn’t a cure, but we can manage some of the symptoms. Our family are used to circumstances where there is a way to fix it, and that’s what they are trying to do when they suggest these options. We tend to look at it as an attack sometimes because these things get mentioned so many times by so many people.
We have to try and remember that these people are just trying to help. We need to help them understand more about our illness and what it does to us. We can do that by sending them a link to good articles about our illness. We can show them some videos of other discussing it. We don’t want to get too technical though, they may get lost in that! Instead try to focus on how the illness affects you as a person, you may want to say that because of this illness you are more susceptible to infect, so you have to be more cautious. You may say that some days you feel like you got hit by a semi and somedays you feel great and can function almost like a normal person.
Yes, there are going to be those who just don’t care and keep throwing out those insane suggestions. I still get preached at by doctors what they are trained to say, because they don’t fully understand my illness. I still get annoyed by that, but politely say that what they suggest doesn’t work for everyone and I talk to hundreds of people with this illness and understand more of what works and what doesn’t, I’m not being lazy or giving up, I just know what works for me because I know my body best and have learned what it can and can not do with this new life.
There are many ways to simply describe some of what we feel with our illness. I have come up with after a lot of thinking a way of describing some of what I deal with, as one question I get the most is, what is it like to have fibromyalgia?
I tend to say, imagine being sick, the worst flu you’ve had, stay up for 3 days straight, and now throw yourself down the stairs. Live with every day, don’t forget to throw yourself down the stairs once you start feeling even a little bit better. This is just one way I use to explain it.
I also always get, “I don’t know how you do it!” To that I say, I wasn’t given any choice.
What is one way you explain your illness?