Monthly Archives: January 2015

Finding a Good Doctor

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I often get asked ‘how do I find a good specialist?’ There are several ways to find one, but it is a lot easier if you already have a diagnosis, so I will start with what to do when you do not have one yet.

If you have been to countless GP’s and specialists and they have not been able to come up with a useful diagnosis yet there are a few things you can start with. You can start by joining a few general chronic illness forums (see the link below) and read other people’s stories and see if you have something in common (that is partly how I got diagnosed after being ill for a long time) and you can ask questions. Or you can Google your synptoms to see if you can find something familiar, but be careful, a lot of illnesses have similar symptoms and you could get overwhelmed! My advice is to be very sceptical. But once you have a slight idea of what your illness could be, you could join online forums or support groups and check it out more in detail. These groups and forums often can help you find a good specialist, they have reviews posted on doctors and links to medical articles as well. You can find them on Facebook but there are also non-Facebook groups and forums.

For those who already have a diagnosis, this is a good web site to check out: But You Don’t Look Sick

Good luck 🙂

Taboos

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Today I bumped into this blog post, I think it is well written and worth checking out

“Taboos don’t help us. Taboos lead to silence and silence means we feel alone. Being frightened or too embarrassed, to express how we feel, or to share our experiences leads to an unnecessary burden. One which we could avoid or minimise through openness. Chronic illness is hard and not just in the physical sense. The emotional aspects of a life of chronic pain or chronic ill health are frequently underestimated. Medical practitioners rarely discuss this aspect with their patients. And patients are in turn often reluctant to discuss it with their doctors.”

Read more: Taboos

Special Treatment

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This is an interesting article, especially because I have been using a wheelchair since recently so I recognise some of the things. However, I don’t mind ‘special treatment’ itself, sometimes it’s needed in order not to get sicker (like the thing where the writer of the article is talking about the queue, I am not allowed to stand, so if I can avoid a queue that makes a massive difference for me)

I have a different problem, I have hidden my illness/disability for so long that now it has become obvious or when I need to talk about it I am extremely embarased. I can’t even tell why it embarrasses me, maybe it is because I was always told to not show and not tell (when I was a kid) And in times when I did, I had very negative reactions. That’s a long story, for another time, in the meantime, have a look at this article:

Read more: Special Treatment

The Cult of Positivity

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An article that describes it exactly how it is! I so agree, the ‘mind over matter’ and all the positivity memes are damaging:

“They all had one thing in common that I found frustrating. They all focused so hard on “mind over matter” and positive attitude, leaving no room whatsoever for true feelings. They all emphasized that “you have MS, it does NOT have you.”

Frankly, that statement is bullshit. It makes me want to take my cane and beat people with it.”

Read more
click here.