10 Things people with chronic illness need to know

10 things People with fibromyalgia need to know

Living with chronic illness has often caused me to doubt myself. In the early days with fibromyalgia I looked in the mirror and at times I hated myself. I blamed myself for my illness and pain. I said terrible things about myself that I’d never say to another human being.

As I recovered and darkness and depression were lifted I realized that I was telling myself a lot of lies. Sadly, I know that I wasn’t alone. As I think back, there are 10 things that I wish everyone with chronic illness knew and understood.

1 – You are still everything you need to be.

It’s difficult when you live with chronic illness and you aren’t able to do all the things you used to do. You begin to feel that you are lacking as a person, as a parent, as a spouse, as a friend. But, you aren’t. 

Yes, you have changed. But, you are not lacking. You are giving 110%, you are probably putting in more effort now than you ever did when you were healthy.

Those who love you will do their best to understand that the changes are just a part of life. Those who don’t at least try to understand, aren’t worth worrying about.

2 – You are not a flake

Unless you were an unreliable flake before your illness, you are not an unreliable flake now. Yes, your illness sometimes means that you make plans you aren’t able to keep. Your illness may also mean that you don’t make plans at all. Having to cancel plans doesn’t mean you are a flake, it just means you are doing what’s best for you and your body in that moment. 

Your illness may be flaky and unreliable, but that does not mean that you are.

3 – Your pain is not your fault

You didn’t cause this pain. This illness is not your fault. You don’t owe anyone an apology for it, least of all yourself. You only owe yourself grace and love. 

4 – You do not deserve this pain

Don’t try to justify how you somehow deserve this pain and illness. You don’t. No one deserves pain.

Your illness is not a punishment for some wrong choice you made when you were young, nor is it somehow a repercussion for some past deed. You did not do anything to deserve this pain.

5 – Someone does care

The depression that comes with chronic illness tries to tell us that no one cares. Often, it can feel that way when we are sitting lonely and feeling isolated. The truth is that there are people who do care, but they can’t be there for us 100% of the time, nor can they be there if we don’t ask.

If you’ve asked for help and someone repeatedly fails to come through for you, it’s possible they don’t care. But, it’s also possible they just have too many issues of their own to deal with, or that just have an inability to deal with watching someone they care about suffer.

6 – You don’t need to make others understand

Not only do you not need to make others understand, you can’t make others understand.

There are those who are empathetic and will do their best to understand your situation, but they will do so on their own, not because you force them. It’s up to them to ask questions, and to learn in an attempt to understand (if they choose to do so). Don’t waste your limited time and energy trying to make people understand when they are not ready.

7 – You are not a failure

Chronic illness can make you think you are a failure, when the truth is that you just ended up on a different path than you had planned. Veering off to a new path or plan in life does not mean you are a failure. If anything it means you are a success, you are resilient, you are able to make adjustments as life throws you curves. It means you didn’t stop trying.

8 – You are not lazy and unproductive

You look around at the things you feel you ‘should’ be doing and convince yourself that because you aren’t doing those things, you are lazy.

If you simply paid attention to all the things you do in a day, you’d realize that you are not lazy and you are actually still quite productive. Give yourself credit for all the little things you accomplish.

9 – You don’t have to fake it

Stop trying to convince the world (and yourself) that you aren’t sick, by faking it. You don’t have to lie about how you feel. You don’t have to plaster a smile on your face when you feel like crap. Stop wasting energy faking that you feel good. That energy is precious.

Be real about how you feel and what you are dealing with. Share the truth with those who love you, and by doing so you give them the gift of knowing the real you. Be fully present and honest with those around you.

10 – You are not an outsider

When you live with chronic illness, it can often feel like you are on the outside of your life looking in. But, it’s up to you to be present in your life and take part rather than sitting on the sidelines.

Yes, there are times when you simply can’t join in the way you’d like, and the best you can do is live vicariously through watching those you love do the things they enjoy.

But, when family and friends are with you, it’s up to you to be present as much as your pain will allow. Allow your family and friends to serve as a distraction from your pain and enjoy every minute with them.