Is it any easier to negotiate having a well-known condition?

[Sarah Tee]

As someone who now has five (count ‘em!) little-known and oft misunderstood conditions, I have wondered whether it is any easier to negotiate having a well-known condition. You know, the kind that have their own buildings and fun-runs. (And lots of funding and dedicated staff allocation.)

I mean, you would usually get diagnosed more quickly, which would be good. But after that, is it any easier? I don’t mean having the condition, but rather getting help, getting quality advice from doctors, not having to fight your way to a decent specialist, getting recognised for govt support or disability accommodations, etc. etc.

[Sarah Tee]

Ack, miscounted. I have six obscure conditions. But one was promptly diagnosed and all I have to do is take a tablet a day that, amazingly, has no side effects and reduces my symptoms to “barely noticeable”.

But it was still me that suggested it to my GP after reading an article in a magazine. And I was very lucky to get referred to an excellent endocrinologist. I cried when she ruled out an endocrine cause for my then-mysterious dysautonomia symptoms because I so wanted her to take care of me. But she did end up being the one to refer me to an autonomic specialist. She even knew his name before I said it!

(By the way, I’m not saying that I’m sicker than anyone else, or trying to play “Who has the most conditions”. It just suddenly struck me that all my conditions are obscure ones. Even my one “normal” one, hypertension, is probably related to my dysautonomia, I’ve just found out.)

[RecipeForDisaster]

I have often thought that there would be a lot of helpful aspects to having something people understood, like diabetes or whatever. I don’t bother trying to explain my conditions to most people. I just say I have very low BP, or I tend to pass out, etc. There are not many support groups, or like you say, fun runs, clinics, etc. Most of my conditions are obscure, and I do think it makes it harder on me. I was dosing out my pills last night, and thought I didn’t have more of one of the anti arrhythmics - I briefly panicked, because I know the pharmacy does not stock that med for anyone but me. There are a few of my medications that have to be ordered every time, because no one else is using them. 

[GasconAlex]

It's always easier if you are one of the crowd because all the options are well documented so even if you have problems with one set of drugs etc. there's always the next layer down.

If you have rare (or really atypical) conditions then it becomes complicated and you need to find doctors who are willing to give you the extra mile. Your illness is also well covered within the specialties. For those of us that fall through the gaps it is really complicated. 

I remember being in hospital with specialists from ENT, neurology and neurosurgery having a bedside argument about whose department I should be under and therefore which floor of the hospital. 

Luckily for me all my administrative stuff is all based on symptoms because they know that a full definitive diagnosis can take years and even with the same illness the problems it causes can be vastly different. 

 

[MikeO]

25 minutes ago, GasconAlex said:

If you have rare (or really atypical) conditions then it becomes complicated and you need to find doctors who are willing to give you the extra mile

this statement is so true. even my Endo stated my DM is atypical. not sure what else to say.

[Sarah Tee]

@GasconAlex, I do hope that each department was trying to claim you, not get rid of you.

[Sarah Tee]

I just remembered, I do have one common condition – allergies, sneezing, itching, runny nose etc., probably caused dust mites. Getting treatment for that has been fairly easy, although unfortunately none of it has worked very well. But I wouldn’t be alone there.

There are even ads for allergy products on the telly! Makes me feel quite normal 🙂

[Pistol]

14 minutes ago, Sarah Tee said:

There are even ads for allergy products on the telly! Makes me feel quite normal

I recently had problems with my isciatic nerve. I walked into my PCP's office proud as a peacock, telling him that I definitely have a "normal people" problem. He smirked and replied" Well, that would be a first!"

[Sarah Tee]

@Pistol, haha, I like that you and your doctor can banter a little.

My current GP, while pleasant, seems to have had a humor-ectomy. I have to remind myself not to make any jokes to her as they go down like a lead balloon.

[GasconAlex]

2 hours ago, Sarah Tee said:

@GasconAlex, I do hope that each department was trying to claim you, not get rid of you.

Luckily the surgeons all wanted me!

[Pistol]

4 hours ago, Sarah Tee said:

My current GP, while pleasant, seems to have had a humor-ectomy.

I know that kind. In cases such as that I remind myself that I am NOT looking to get married - but simply ask for their professional opinion. There are a great many docs out there that really dont know how to relate - but they may have good ideas.