8 things you need to remember when living with chronic illness

When we live life with chronic illness, we often get so wrapped up in our illness that everything looks bleak and hopeless. Everything hurts and we’re just beyond tired. We feel like our body is attacking and often as a result of feeling so bad physically, our mental health takes a toll and we begin to feel that it’s not just our body attacking but life and everyone around us. As you face life with chronic illness, here’s 8 things you need to remember.

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, by shutting others out you aren’t giving them the chance to try to understand. You are preemptively rejecting others out of fear that they will reject you. Give others the choice to hear what you need to say. Open up to those around you and you 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 truly 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, employee, boss- 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.  That’s been true for 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 to remember that 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 and feeling. Sometimes just talking openly and being heard is enough to calm my fears and leave me feeling less stressed and anxious about my illness and life.

5 – It’s not all in your head  – Too often, when we life with invisible chronic illness,  we are made to feel that our pain is all in our head. With illnesses that don’t have a test to prove the problem, we feel there’s nothing to “prove our pain”, and that leaves us worrying that it’s all in our head. 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 – Often we feel like if we mention our illness, or 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. We all want to talk about our experiences in life, whether it’s a mom sharing her life as a mom, or someone with chronic illness sharing what they deal with. 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. It’s difficult 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. You are not letting anyone down by taking care of yourself. You are ensuring that you can be there for them when it matters most.

These are all difficult things to remember as we face chronic illness. 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.

Related Posts:

• 6 Things those living with chronic illness need to know
• 10 Things people with chronic illness need to know
• 4 Things I Need to Remember to Help Me Get Through Bad Days
• 10 Ways to keep Chronic Illness from stealing your life