Monthly Archives: November 2014

Invisible Illness/Disability

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Excellent story of how people can misjudge invisible illness/disability:

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Chronic illness and a changing self
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Chronic illness and a changing self

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lovemylifeanyway

chronic-illness-wisdom-title

Chronic illness eventually changes the way you think about life.  This seems to happen bit by bit every day. The speed of this change would depend on the illness severity and the personality of the person.  I actually think I can feel my thought patterns changing. Not only has my body slowed down, but my thinking and decision making has become a lot more controlled.  I am becoming a lot more wary of tension and emotional build up. Some people may look at this and think I am not excited or passionate or involved. I am those things, it is just a slow, paced excitement, if you get what I mean. I also make decisions based on something other than head or heart, but I am not entirely sure what it is. Maybe I have started making decisions based on intuition about what I need?

Here are some thought patterns that…

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Relationship/Friendships, some links

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Every now and then I notice awful stories of people who have been left by partners when they became chronically ill or disabled. It’s shocking, but it says more about the leaving partner than about the ill/disabled person. I personally think it means it wasn’t really meant to be, no one wants to be with someone who can not handle it.
This article sums it up quite well I think, there are some similarities as in friendships that dissolves once someone becomes ill/disabled:

“I have noticed a trend in which husbands or wives, or boyfriends or girlfriends, tend to leave the person they “loved” behind. Their primary reason is that their partner’s illness became too hard or stressful on them, and they just could not take it anymore. They say they are tired of fighting, due to the insurmountable obstacles continuing to pile up throughout the course of their partner’s chronic illness. For us who have been left because of these reasons, there is one major unspoken truth that carries us on past this tragedy -Our partners, who were too stressed because of our illnesses, could never imagine the pain and darkness we both endure and overcome. While they are busy fighting with external forces, we are busy waging a war within, refusing to wave the white flag and surrender our lives.”

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click here.

What Not To Say

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What not to say to someone with a disabling chronic illness

1.)  It must be nice to not have to work

Actually we would like to be healthy and being able to participate in society, do you know how boring it is to not be able to live a normal life?

2.) I wish I had the time for a nap

I bet you never have experienced the type pf nap that is not refreshing, the type where you wake up feeling even worse than before…

3.) You are just getting older

That is an extremely stupid thing to say, getting older does not mean being so ill that you can no longer function properly. Some people even say this to people in their 30s or 40s, which is ridiculous!

4.) But you don’t look sick

Thank you, it took a lot of work to look like this.

5.) You need to tough it out

Let me kick you and tell you to tough it out (just thinking this, not actually doing it of course, I am way too weak to kick that hard haha)

6.) It must be in your head

Oh really? How do you know? I happen to have a genetically inherited illness, not sure how that can just be in my head

7.)  Snap out of it

You snap out of your nastiness!

8.) You just need to be positive

This is a annoying one! I had a friend actually tell me that I could ‘cure my genes with my positivity’, she was sure of it.

9.)  Everybody gets tired

Yes they do, but most people sleep and they are refreshed again, that does not work like that for us

10.) You are just having a bad day

Probably well meant, when people do not know what to say. Sadly it might actually be one of my good days

11.) There are people who have it worse than you

There are, but it is no use looking at who has it worse or less bad, it does not change anything

12.) You just need to get out more 

I wish, I would love to!

13.) You are just depressed

There is no such thing as ‘just depressed’, depression is a real illness. Many people with chronic illness or disabilities get depressed due to the situation they are in. It is a serious issue and can not be taken lightly.

14.) It can not be that bad

Yes it can!

15.) You need more exercise  

Don’t you think we already try that? Trying and failing all the time. But not giving up!

16.) This too shall pass

Answer:

no