CF is such a funny disease. Ok, not really humorous but fascinating. Its the only disease that affects and attacks every single part of the body. Lungs, pancreas, kidneys, blood sugar, sinuses, heart, reproductive system, vitamin levels, and disfigures the fingers and toes.
You know the saying "when it rains it pours?" That saying is perfect for CF, because if one thing happens it creates a cascade affect. CF isn't like most. Once you think you know whats going on and feel as though you've got a grip its all taken right out from under your fingertips. We are constantly playing a guessing game. Dealing with and sorting through a million layers of issues.
It's felt like its pouring over here for some time now. The worst part is the feeling of being alone or that no one really understands the struggle. It seems that all anyone can say is "I am sorry" or "I know exactly how you feel" which if I'm honest is complete crap. How could you? I get that they're trying to be empathic but the reality is that you don't know and by saying you do minimizes what I'm struggling with.
I get that its difficult to find the right words to say to someone like me. Sometimes saying nothing is SO much more powerful than a book full of words. Having someone to just listen to me, without giving advice or placing judgement, is just what's needed. I can't tell you how many times in my 31 years I've heard someone tell me "it'll all work out" or "just stay positive"; as if I'm not already doing everything I know to remain positive.
The best thing you can do to support me is take a step back, breathe and listen. I just need someone to hear me, to lend an ear and possibly a shoulder.
If you have someone close to you who is dealing with some hard medical stuff below are a few things to avoid saying.
But you don't look sick: People expect sick people to look a certain way, but 96% of chronic illness and disabilities are invisible.
You need to think positive: Um, this is just crappy. If positive thinking would cure us, we wouldn't spend billions on toxic meds and doctors. This also indicates that it's our fault we're sick because we just aren't thinking positively enough.
Get well soon: HA!
You're just depressed: Depression cannot be described as 'just depressed'; its much more than that. It's the worst feeling in the world.
You just need to take you mind off being sick: That's just not gonna happen and not helpful. The disease is apart of you. Keeping my mind on my illness is what is keeping me alive. I've got medications to remember, doctors appointments to attend, etc. It's an ingrained part of me.
You need to be strong: The strongest person in the world will have bad days. We all do, because we're human and we need to let our feeling out.
Remember, if your struggling for words you don't have to speak. We humans have many levels of communicating. A loving smile. A soft but grounded hug. Lending our ears or shoulders.
I'm looking forward to dry soil.
~Doodlin'
You know the saying "when it rains it pours?" That saying is perfect for CF, because if one thing happens it creates a cascade affect. CF isn't like most. Once you think you know whats going on and feel as though you've got a grip its all taken right out from under your fingertips. We are constantly playing a guessing game. Dealing with and sorting through a million layers of issues.
It's felt like its pouring over here for some time now. The worst part is the feeling of being alone or that no one really understands the struggle. It seems that all anyone can say is "I am sorry" or "I know exactly how you feel" which if I'm honest is complete crap. How could you? I get that they're trying to be empathic but the reality is that you don't know and by saying you do minimizes what I'm struggling with.
I get that its difficult to find the right words to say to someone like me. Sometimes saying nothing is SO much more powerful than a book full of words. Having someone to just listen to me, without giving advice or placing judgement, is just what's needed. I can't tell you how many times in my 31 years I've heard someone tell me "it'll all work out" or "just stay positive"; as if I'm not already doing everything I know to remain positive.
The best thing you can do to support me is take a step back, breathe and listen. I just need someone to hear me, to lend an ear and possibly a shoulder.
If you have someone close to you who is dealing with some hard medical stuff below are a few things to avoid saying.
But you don't look sick: People expect sick people to look a certain way, but 96% of chronic illness and disabilities are invisible.
You need to think positive: Um, this is just crappy. If positive thinking would cure us, we wouldn't spend billions on toxic meds and doctors. This also indicates that it's our fault we're sick because we just aren't thinking positively enough.
Get well soon: HA!
You're just depressed: Depression cannot be described as 'just depressed'; its much more than that. It's the worst feeling in the world.
You just need to take you mind off being sick: That's just not gonna happen and not helpful. The disease is apart of you. Keeping my mind on my illness is what is keeping me alive. I've got medications to remember, doctors appointments to attend, etc. It's an ingrained part of me.
You need to be strong: The strongest person in the world will have bad days. We all do, because we're human and we need to let our feeling out.
Remember, if your struggling for words you don't have to speak. We humans have many levels of communicating. A loving smile. A soft but grounded hug. Lending our ears or shoulders.
I'm looking forward to dry soil.
~Doodlin'
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