I am going to tell you about ME. Most people do not know anything about this disease. I don’t blame them. I didn’t know anything either until it hit my son. I had barely heard of ME. I thought people with ME just slept all day. I don’t know what it is like to have children suffering from other diseases, how they are coping, what their challenges are in everyday life. This is how it is. We can’t bear this burden for them and we do not have the ability to take it all in.
If the child of one of my friends became seriously ill with a disease I didn’t know all that much about, I would probably try to gather information and read about it. (I have actually been in this situation, so I know I would have) I also know I would never acquire the same level of knowledge as those closest to the child. I would never know what it really is like to live with this every day. Only those who live it every day, fighting the battles, can. It is also a risk that what I read does not correspond with their reality.
Several diseases which are considered unproblematic today, when it comes to acceptance and diagnosing, were treated entirely different a few years ago. ADHD, autism, fibromyalgia and most psychiatric disorders. The people closest to the patient were accused of abuse, neglect, Münchausen’s by proxy, or the patients were accused of being hypochondriacs. Today we know better. On behalf of the sufferers – thankfully we know better.
Back to ME. Those suffering from ME today are often met the same way as these unfortunate patients did back then. In a way that we should not want to be a part of. With all the knowledge that we have, all the «Facebook-love-and-hearts» which is everywhere on-line, and we know so well what went wrong in medical history. Unfortunately several of these patients are children and teenagers. Do we really accept this? To be met like this? On behalf of the children that we love more than anything?
Or should we – as I do– stand up and fight, sharing the hidden experience we have gathered in our little hide out? I – as the only person to see my boy every day, all the time, every night – I am the only one who can speak up for him. He does not have the ability to speak for himself. Would you not do that if it were your child?
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