Shopping around for decent care…


I have already blogged and written for The Mighty about unhelpful doctors and Dr Google …and my frustration with finding help from anyone with chronic illness who is really struggling. The more I write the more I hear from people in the same situation and often way worse. There is a reason that this is striking such a strong cord with people and that is because it is happening all the time, all over the globe!

Sadly, we are able to “shop around” for most things that we spend our money on these days but there doesn’t seem to be away to shop around for health care. I am sorry that I don’t know what the answer is but I do know that joining a local support group whether on line or in “real life” can be an amazing help and I have had some real success with joining a few of the EDS groups who list the doctors and specialists who they have had success with. But it only goes so far as there seem to be precious few who really give a decent level of understanding and help and many people live too far away or can’t get in. The waiting lists of the decent doctors are so long that people are waiting a year just to be seen the first time.

I have realized, both through my own experience and those of others that there are a few things that we can do to make things as easy as possible for everyone. Not only to help the next doctor we see to help us better but also for ourselves. To avoid the anguish and confusion and to put ourselves across as knowledgable and “sane”. That sounds like an awful thing to say but I know that when my Vulnerability Exhaustion is high, my spoons are low, my brain isn’t working as it should, and I start rambling or trying to think of everything on the spot, I can be brushed aside in the first instance and never given a second chance.

We need to come across as concise, knowledgeable, helpful, educated in our condition, and strong. Without even opening our mouths we can start by handing over a printed out pack of everything that they need to know. This pack can include:

  • A list of all medications that we are on currently and maybe even some that we have been on recently or have tried and failed.
  • A list of our carers and specialists and permission for them to contact them if needed.
  • Print outs of any relevant results either recent or long term.
  • I include a list of organizations that they can look up or contact. The EDS Society is very well regarded and as far as I am concerned if they are the only people they look up then that is fine, but I want them to be the first that they check with and not the last.
  • My family medical history. As boring and irrelevant as that might be, they are going to ask those questions anyway.

The second thing is that I studied both Psychology and Biochemistry at University and so at some level I can speak the lingo and throw in that I know what I am talking about. But most people don’t have this advantage. Even if they are are geniuses and bright as a button, they may have second language issues, be extremely fearful around doctors or all kinds of other blockages. So having someone along who does know what they are doing is often a good idea.

The third thing is to be super confident of our own body knowledge. We are each and every one of us experts in how our own bodies feel and we should not allow anyone to bully us out of that.

I just wish there was a way that we didn’t have to pay for stupidity … if I go into a shop and ask for mustard and they don’t have any I get to leave without spending anything. But if I go to a doctor and ask for help and he gives me nothing but his ego, then why should I have to pay?

Does anyone else have any great ideas about how to actually shop around for decent care?


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