"It doesn't seem like there's much wrong with you. You can hold a normal conversation. You remember things."
"Can't you take a drug to heal your brain?"
"When are you going back to work/school?"
"You can afford to lose a few IQ points. Now you know what it's like to be average."
"Why haven't you fully recovered yet? Is there something else wrong with you?"
These are just some of the comments and questions from family members, friends, colleagues, and strangers I have received over the past year. I will give them all the benefit of the doubt and say they have nothing but good intentions, and these misconceptions or signs of impatience come from ignorance and a lack of knowledge or awareness. I might even be part of the problem, insofar as I have struggled to understand myself and communicate my needs.
Do you all have any suggestions or similar experiences to share? How have you explained your illness, recovery, and ongoing conditions and disabilities to others? How does your explanation change, given the context? For example, how do you communicate your situation and needs in family vs. the workplace vs. public interactions with strangers?
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kitnkaboodle
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I have been through pretty much exactly the same things. Trying to get others to understand proved to be one of the worst challenges. After finding the main Encephalitis Society webpage, I sent this link to all who had questions. It did a much better job of explaining everything than I could!
Everyone I know has a cell phone or computer, so it was the best way to answer their questions. One of the key paragraphs states:
Coming to terms with the problems left by encephalitis can be potentially distressing and challenging for everyone concerned. Unlike other parts of the brain, you cannot see the brain injury or repairing. People assume all is back to normal when in fact some areas are still in recovery. Encephalitis can be described as an invisible disability which affects not only one person, but the whole family. Emotional support for the whole family may be needed.
So, in addition to the patience we need for ourselves, we must find even more for those around us!! UGH! 😇
Wishing you the best in your attempts to educate those around you!!
Thanks, OldGnome! But what to say when the interaction is brief and someone asks what's wrong? Sending a link won't work in a scenario with strangers or acquaintances...
Hello again kitnkaboodle! Hope Saturday is treating you well!
I was going to respond to this yesterday, but I decided to put some thought into a response. Probably too much, so I will just share a few thoughts/ideas. Perhaps they will be of use to you.
Rereading a lot of posts, I recall you are still in year number 1 of recovery. For me, that's when the most of the changes happened. I was often very dizzy, and would bump into things, etc. People would indeed give me strange looks. What I did isn't necessarily what YOU should do, but during this time, I stayed home most of the time and limited my exposure to others. (This was a temporary thing, and now in year number 4 of recovery, I am metamorphosing* into a social butterfly of sorts!)
* "College word!" I get 5 points!!
When I did go out and got some strange looks, I simply reminded myself that this event would last less than one minute, be over, and was nothing to be overly concerned with. I had to be merciful and a lot more patient with myself. Your brief interactions with strangers/acquaintances sound like they will also last less than one minute.
I had to remind myself that I did not owe any explanation to strangers and others with whom a brief encounter would occur. None whatsoever!!
Essentially, I had to develop a "tough outer skin" of sorts. Arming myself with these facts helped stave off the anticipatory anxiety that led to a lot of exhausting "what ifs".
When I learned to stop worrying so much about what others though of me, it was a very liberating thing! Come to find out, I was making WAY too big of a deal out of essentially trivial things. I tend to be self critical, often overly so. Even as I write this, I have to continue to learn to not be so tough on myself! But I guess engineering gnome types like myself are made this way! 😁
And that's all for the moment!! It has taken me about 2 hours to write this reply; so much for my former efficiency! Humor is an important thing to maintain. So for no reason at all, I will include a pic of a visitor that has been harassing us here in the hills. This pic is not my house; it is from the local paper!! I think he was looking for a pic-a-nic basket, as Yogi would say!!
Thank you for the thoughtful response. I really appreciate the input. And I love the picture of the bear! So cute and alarming at the same time.
You’re absolutely right that these encounters are brief, I don’t owe anyone an explanation, and I also tend to make something out of nothing. I just started my second year of recovery, and I stay home 95% of the time, which is helpful and necessary… it only took me nine months to realize that! Ha
Even so, my conditions evoke more of a reaction from other people and are a huge burden in social interaction. I tried to describe what happens in my other post about flooding. No one has responded to that one yet, and I wonder if it’s because no one has seen that encephalitis effect or they don’t know what to say about it. Regardless, I appreciate your words of wisdom, and I will bear them in mind the next time I feel overwhelmed, hopeless, or embarrassed in a public setting.
Wow. I’ve had all those! Because they come a drip at a time I hadn’t put them all together. The pressure after 3 years to appear ‘normal’ is still high. I did send a few people Letter to my Brain also on the Encephalitis Society website. The problem is that some days I am almost there so no one understands that there are good and bad days. As Old Gnome says, Encephalitis Society is really helpful.
Thanks, Wygella! Great point about good days and bad days. On bad days, some people (e.g., my parents) think I am getting worse or have something new wrong with me, and they freak out. It's hard for some people to understand the very, very long recovery timeline for E. The path is not straight or predictable.
It’s so hard for people to understand what’s happening to us because we look so healthy and normal. People who love us don’t mean to upset us when they panic. But they do. 3 years later my husband knows to let me talk and just hug me, but he still gets over protective at times! And perfectly put. It’s a very winding road.
Hi kitknaboodle! Sorry I'm only getting round to this now.
In my case it has taken my whole life to get to where I am today and I'I'm still working on some after effects like my profound OCD, disinhibition, keeping up with conversation - people speaking too fast affects my slower processing speed I've always had. My epilepsy has significantly improved (no seizures for 29 years now) although I still take medication for life it'it's well worth it. I started school after E
It just disappeared off the screescreen (my stupid phone)
I had many people being impatient with me over the years, but I do have ongoing conditions as I stated in above post. I have put up similar posts- Undiagnosed ABI and Update of ABI diagnosis and my story is on the Encephalitis Society's website Your Stories (under my name).
Other than the lovely Wygella who has now become a very close friend of mine!😁 I find explaing to other people regards starting school after encephalitis are not as empathetic or as understanding as Wygella is because all other E warriors had it when they were teenagers/adults or older and there are not many people around like me. I feel very lucky to have a close friend who started life with Encephalitis like Wygella to be able to empathise with someone else in a similar boat.
Nobody ever knew what was wrong with me and couldn't make me out. I have been told I have a high IQ, yes I have a great memory better than some people who never even had 'E' bar for following a plot on TV or when I get interrupted when I'm talking, or the subject gets changed without notice. Although my executive functioning is pretty last during group conversation like my processing speed and mostly my disinhibition in social situations is completely last always has been. I never really had a social filter like we are supposed to when children are growing up they develop these skills that I didn't - something to do with developmental delay because it was the day after my 1st birthday when I had encephalitis so probably entirely different to the majority of E warriors. I wish I knew what my first or second year of recoverrecovery was like or even actually having the illness but no nothing, like the average oerson I only remember from the age of either 2 or 3 nothing prior to that I'I'm afraid. I'm still working on my OCD and disinhibition to this day but far much better than I was.
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