I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons" - Christine Miserandino
image by: Spoonies
There are a handful of comments that I see over and over again from those with Fibro and various chronic illnesses. These are feelings that I fight with often myself; the more I think about them the more I realize they are feelings that everyone struggles with (even healthy people). I don’t know if those of us with chronic illness struggle with these issues more, but here are 8 things spoonies need to know.
1. You are not alone – I’m not even referring to the thousands of others who share your diagnosis, or to the community here on the internet that you can turn to. You are not alone. We often shut ourselves off from others around us, feeling that we can’t share our feelings, they don’t want to hear them, or they won’t understand them. But, that shutting out of others is on us, we make that choice. Give others the choice to hear what you need to say. Open up to those around you and will likely soon realize that you are not alone. They may not be able to identify with exactly what you are going through, or understand exactly how you feel, but they will do their best to listen, just as you would do for them. Give them the chance.
2. You are not a failure at life – Everyone is a failure at some point in their life. We’ve all fallen down, but that doesn’t mean we’ve failed at life. The only time you are truely a failure is when you refuse to pick yourself back up and try again, when you give up. Don’t give up. Chronic illness can make us feel like terrible failures at life, at being a good partner, spouse, parent, worker, but only because we aren’t making the right comparisons. We all have this “ideal” in mind of who we should be, the perfect parent, the perfect spouse, worker, etc. No one is perfect. You weren’t perfect even when you were healthy! And, even if you can’t be the person you were before that still doesn’t mean you are a failure. You are simply doing the best you can and that makes you a success!
3. You don’t have to apologize – When did this become a world where people feel they have to apologize for everything? Ok, you stepped on my toes (literally) or pushed me into a wall, you should say you are sorry, but you should never feel that you have to apologize for being who you are, and that includes being ill. You are not responsible for your illness, you didn’t cause it, you don’t deserve it, so you should never feel that you have to apologize for it.
4. It’s ok to talk about it – After a while we get tired of even thinking about how we feel and because we don’t want to think about it, we assume no one else wants to hear about it, so we don’t talk about it. At least that’s what I’d say has happened to me. Unless someone specifically asks me something about my health I rarely mention it, and I’m even less likely to talk about how I feel mentally, about my fears, and all the other thoughts that roll around in my brain. I need this reminder – it’s ok to talk about it. It’s ok to share my fears and to talk openly with others about what I’m thinking. Sometimes just talking openly is enough to make me feel much better.
5. It’s not all in your head – It seems that often we are made to feel that our pain is all in our head, especially those with chronic pain disorders like Fibromyalgia. We wonder if it’s all in our head because there’s nothing to “prove our pain”. It doesn’t help when we read silly articles online or have some “friend” who makes a comment. Just because there’s no way to “prove” pain through tests, doesn’t mean it isn’t there. Your pain is real, your fatigue is real, your illness is real.
6. You are not a whiner – This falls in with #4. Too often we end up feeling like if we mention our illness, our pain at all then we are just whining. Talking about your pain does not make you a whiner, it makes you a person. You should never feel that you have to take a back seat and avoid talking about the realities of your life. Even if there are others who say that you are just a complainer or making it up, or just whining, that doesn’t mean it’s true. Share your truth, and if others can’t hear it it may be time to stop giving them the chance.
7. You don’t have to explain yourself – We often get stuck in a rut of feeling like we have to explain ourselves, or provide excuses for ourselves, our actions, our need to “pencil it in” or cancel at the last minute. Constantly feeling that we need to explain ourselves only adds to the guilt that we shouldn’t be feeling anyway. It’s frustrating. There’s no reason that you have to provide an explanation for your actions (or lack of actions). If you can’t do something just say “no”. If someone wants to be difficult about it, walk away. If you feel comfortable enough with someone that you want to share the challenges your illness provides, do so. But, there’s no need to feel that you have to explain yourself every time you need to say no or set a limit.
8. You are not letting everyone down – I know it often feels like you are letting everyone down. When you have to cancel plans at the last minute, or you aren’t able to take your children somewhere they want to go, or do something with them that they want to do. It hurts inside when this happens. And, while they may be disappointed for a moment, what is more important is that you are there in the long-term, that you are doing the best you can. If that means that you set limits as you go, then you are doing what you should do. We all need to set limits.
It’s hard to keep these things in mind, I know it’s something that I struggle with daily. We all have fears, but we need to know that we are not alone, we are not failures, we don’t have to apologize, it’s ok to talk about it, it’s not all in our heads, you are not a whiner, you don’t have to explain yourself, and you are not letting everyone down. Keep doing the best that you can.
Source: Julie Ryan, 8 Things Spoonies Need to Know, Counting My Spoons, March 16, 2015.