Don’t talk about it, don’t tell anyone and pretend to be ok


Wondering who else was brought up this way? These words were often spoken to me when I was a chronically ill kid. I was also told that if someone asked me ‘how are you?’ that I should lie and say ‘I’m fine’, any other answer was considered ‘rude’. I still have no idea why that was considered rude if you say that you’re not ok, or that you’re in pain, depressed etc. Sadly society expect people to put up happy fakery, that hasn’t changed much since I was little.

But I also wonder if there was something else to it, maybe that it would reflect on my parents if I gave an honest answer, maybe they thought it mean I wasn’t brought up well, that people would think me a rude kid? Or were they thinking what people would wonder about me, about why I was not well? I have no idea if my parents ever talked with friends about the fact their child was ill, but I doubt it. After all, doctors couldn’t find out what was wrong with me, so my own parents thought it was in my head and that I was just a rebellious teenager.

I suspect this has happened and still happens to kids who are ill, where the doctors fail to diagnose them. It is quite common to be misdiagnosed, especially with illnesses like dysautonomia/POTS and Ehler-Danlos Syndrome. But I am sure it happens with other illnesses too.

How does that affect people when they are adults? I can not speak for other people of course, but I am still affected by it year and years later. Whenever I go to a doctor I expect them to give me a blank stare and say they don’t know what’s wrong with me, or that it is in my head. I expect to not be taken seriously at all. Even though in the meantime I have met plenty of good doctors. Problem is that this issue with doctors wasn’t only in my childhood, but most of my adulthood as well, it’s something that still is very hard to come to terms with and has sort of created an expectation of how doctors will treat me.

I’d love to hear stories of other people and how this affected them. Or maybe it doesn’t bother you anymore? Tell me šŸ™‚


Don’t talk about it, don’t tell anyone and pretend to be ok


About livingwellwithchronicillness

I'm just a random person with a few chronic illnesses who likes to blog. I have Ehler-Danlos Syndrome, POTS and a few other things. At the moment I am quite housebound so I decided to create this blog. Will update my profile when I'm a bit more inspired :)

2 responses »

  1. I think I grew up with a similar attitude. I had asthma from the age of 5 – and was literally ashamed to tell anyone! My own kids had chronic illnesses, and while the cause was never found, their white blood cell count was up – so they were fighting Something. We were very lucky in our GP, and the amazing schools, where Most of the teachers were extremely understanding. But I totally understand your attitude to doctors. I am the same with a new one.
    I went to one doctor (Once!) with my 2 year old (years ago) and said, “I think she has secondary lactose intolerance.” He said, “How do you know this? Are you a nurse?” I said, “No, but I can read!” hehe
    I think nowadays things Have to be talked about and brought into the open. You ought to be able to answer the “How are you?” question honestly – “It’s a bad day, today.” I think covering up how you really feel only adds to the stress.
    People need more education on these different chronic illnesses – and unfortunately “people” seems to include some doctors.
    Good Luck. I hope you find some good doctors to stick with.

  2. I’ve recently started telling people how I really am. I can tell when people find it awkward. But, I don’t really care anymore. Their emotional reactions are not my problem šŸ™‚

Leave a Reply

Please log in using one of these methods to post your comment: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s