Wednesday, February 26, 2014

The unfortunate timeline of Chronic Illness - by Penny Rorrer

1- Symptoms start
2- You try over the counter medications
3- You bring it up to your Doctor
4- Your friends and family say "oh, everyone has that from time to time, it will go away"
5- You bring it up again to your Doctor, they do not remember you mentioning it before and there is nothing in their notes. They recommend the same over the counter meds you have been taking.
6- Your first trip to the ER...they make you wait hours then send you home after a blood test saying it is probably a virus.
7- You follow up with your Doctor, who orders the same blood test and gives you antibiotics "just in case".
8- You start searching for your symptoms online, family and friends start to accuse you of obsessing and tell you that if you stop thinking about it, it will go away.
9- The Doctor tells you the blood tests look normal and to come back in six weeks.
10- Before the six weeks is up you are back in the ER...the same blood test is done...they give you a few meds to calm your symptoms and send you home.
11- You go back to your Doctor who refers you to a specialist...the earliest they will see a new patient is 4 months away.
12- You end up in the ER 3 times before you see the specialist. They whisper that you are a drug seeker and ask about your stress levels.
13- Your family and friends are getting "sick" of you always backing out of plans and going to the ER so much. Some start avoiding you because they believe you are just seeking attention.
14- You see the specialist who orders a few more tests to check for the most common causes of your symptoms. They come back normal.
15- You start to wonder if you are just crazy and it is all in your head.
16- More trips to the ER with them starting to brush you off in a more blunt manner.
17- The specialist starts to test for more obscure causes of your symptoms.
18- A test comes back positive... You Have A Name For It!
19- You get home and start researching your condition online and discover there is no cure, no good treatments and a lot of conflicting information.
20- You tell family and friends that you found out what it is...and there is no cure.
21- They have never heard of it before (and because of that, cannot believe it can be all that bad)
22- Your primary Doctor knows very little about it and the specialist does not treat it so you search for one that does.
23- You find others with the same condition and create strong bonds, like Soldiers in the field fighting the same enemy.
24- Your family and friends still think it is not "as bad as you say it is" and still think that attention seeking plays a huge part. They "prove" this when you "ignore" their advice for how to live and handle your condition. To them, it proves that you do not want to get better because if you did you would try their ideas.
25- You try to get family and friends to help you raise awareness of your condition...but they don't. They are 'over it' and, besides, if it was a real problem then it would already be better known. This leaves only those suffering to work for awareness.
26- All this time you are struggling to find the right specialist to help you manage symptoms, battling with ER Doctors who automatically assume you are seeking drugs and simply trying to make it through another day.

Sometimes a diagnosis comes swiftly...sometimes it can take months, years or decades.

In the end, though, you are often left with a sense of if having a chronic illness was a choice you made.

Those without chronic illness who read this might say it is "just another plea for attention" but the absolute truth is that it is stark reality.

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