**EDIT** I feel like I totally went off track in this post but once I started writing it, I was on a roll.
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You aren’t alone anymore.
What’s the hardest part of your illness, invisible or otherwise? Let us know down in the comments!
About an hour ago, I received a blog request asking my thoughts on Invisible Illnesses and the impact it can have not just on those suffering, but family members as well.
Here I am, almost 6 years into my Chronic Illness Journey and I’m still blown away by the words and actions of those who make the saying “Seeing is believing” to be true, no matter how well meaning they might be.
If we look fine on the outside but they can’t see what’s wrong with us, a lot of people assume we must be faking.
I did not say that to be rude or put others down. Before I got sick, I probably had that same mindset as so many others in our world.
Most people I’ve tried talking to about this believe if you can’t see it, it must not be real. Chronic Pain, invisible or not, is very real.
Chronic Pain is hard enough all by it self. Throw in people openly or secretly believing that we just want attention and it makes it that much harder. Even harder still is dealing with an invisible illness while looking fine on the outside.
I know for me personally, I’ve always been at war with myself, trying to decide what I want more. To educate others about my illness, or to try and hide how bad it is because I fear losing those I love.
I’m almost 6 years in and I still feel ant sized when I’m asked to verify my illness “otherwise you just want attention”
What most people don’t get is no one should have to explain or justify their illness but many of us keep trying to make them understand that its not all in our heads. That we really are sick. That just because we were able to do something before that we should be able to do again today.
Being asked to “prove” how sick we are brings up a lot of guilt because “maybe it is all in my head” or the stinging words of someone who saw you walking around fine without help yesterday yet today you are in a wheelchair so you must be faking.
From a recent personal experience I had with family admitting they didn’t believe I was even sick because I “could have found a way to fake labs, test results, surgeries and so on.” I once again I feel ant sized.
Its heartbreaking how many people have the mindset of not just disbelief in our conditions but also that since they don’t believe us that they don’t have to support us as we go through this.
I’ve said it a million times that I can deal with their disbelief of my conditions but just because they don’t believe me that doesn’t mean they can give up on me until I stop “faking”.
They can think what they want, I can’t make them believe me. But to hear the disbelief is like a punch to the gut. Add on how hard having an invisible illness is while losing support because of your “so called Invisible Illness” and you may feel ready to explode.
I have started our towns first Chronic Pain Support Group and its amazing how much better we feel knowing we aren’t going through this alone.
Trust me, when you finally find someone who understands and deals with the Chronic Illness part of your life along with you, you are never alone.