How do you guys deal with the general lack of social care about concussions?
 

So I'm about 7 months out now. I don't have a splitting headache every day, I don't feel dizzy and nauseous every second day. However if I push myself too hard I do still get headaches and feel very drained. I'm more 'functionally' ok now rather than not functioning at all. But that just in many ways makes it harder, as instead of avoiding social events you go to them, but then have to explain why you only stay an hour, not four. Or why you wouldn't drink, or go out partying afterwards.

From day 1, pretty much everyone I knew wanted to debate the legitimacy of the concussion, this even coming from family members. But even after half a year, I'm still not really noticing anyone coming around, now "you don't have a concussion" has turned to "surely you'd be better by now you just hit your head, people hit their head around the house every day". With them trying to bring their personal experience of how they smacked their head too one day and was perfectly fine.

Unfortunately this sort of attitude fills me with barely controllable rage, but I don't think I know a single person who hasn't expressed some form of it. Is this the norm for you guys? How do you deal with this?

I tell them...don't hit your head, the last thing you want to experience is the last 2 years of my life, or , this is one club you don't want to join.

I told my wife the other day borrowing from a Three Dog Night song lyric..."this is the strangest party I have ever been to", only mama didn't tell me not to come to this one.

I am feeling good enough now to have a little fun with it. I sign off all my texts with an anchor emoji, customers love it and am going to name my boat this summer....the flying anchor


Bud

You can't convince them. But, you can inform them. Tell them that 15% of concussions cause prolonged problems and some cause lifelong struggles. Every brain responds differently. Every concussion is different.

As Bud said, This is the strangest party I have ever been to.

Wow, that Three Dog Night song ( Momma Told Me Not to Come, 1970 ) was a hit the same year I had my first bad prolonged problems from a concussion. Seizures, cognitive and memory problems. Dropped a full grade point as a high school sophomore. Just a bad header in soccer practice. Took me 2 years to recover to a functional level.

Man if I could begin to describe how awful people are in understanding what's wrong. I've heard it all from wow I thought you would be better by now too wow you're still having a hard time. My favorite is when people say I feel like that too. But they have no idea what it's like to feel like that everyday not just once in awhile. Getting people to understand what you're going through is absolutely impossible. People who only talk to you every once in awhile I just tell them now that I feel better than I did seems to be a better answer than trying to explain how I feel better. Only my neurologist and I know exactly how I feel. Terrible to feeling that way alone.

Cheers for the responses guys :)

Bud, glad you can look at things with such humour. Honestly, that was the way I dealt with things when I was younger, its been a bit harder the older I got I found. More responsibilities and stress. I have it a lot better than some, so if you can view it that way than I should be able to aswell.

Mark, I completely agree. That is the best way to answer it. The problem seems to stem from people who feel they've also hit their head and are 'fine'. I find this kind of links in with blame shifting, that you're causing the issue because they got a headache for 2 days and got better, not suffered for months.

Muss, I agree. I think most people struggle to deal with long term illness. Illness to them is something you suffer from for a few weeks and then 'get on with it'. Not something that drags you down for longer and longer durations. I can kind of understand the lack of understanding, until they try and offer advice, which nearly always equates to 'get over it'.

Pcs
 

The lack of awareness is really bad--if only I had known what I know now!
Even my PCP gave horrible advice causing me to push through at work for 5 months.

Just don't push it- having learned the hard way. Tell those that encourage you that it isn't worth the aftermath.

September will be 2 yrs for me, yet I still have numb feet, vision and vestibular issues. Getting told that it was 'probably psychosomatic because I was back at work' (after 2 weeks of half days at home) was the icing on the cake!

Grace,

My feet aren't numb...the get tingly, achy and several toes can get spasms when walking at times, never before dos inexperience this.

Almost 26 months out for me now.

Pcs
 

Hi Bud,

Agreed, my foot issues were all post-concussion as well. I've just started Benfotiamine supplements (per neuropathy suggestions) and it has only been a week but I am cautiously optimistic. Doesn't hurt to try it.

Conversely, the B-vitamin regimen had me totally out of my usual complacent self. It was so crazy- I was always in a rage. My kids were astounded.

Now that they are home and doing nothing I think resuming the vitamins may be a good idea!

Have a good weekend,
Grace

really other than this forum and this one girl i recently met, i dont know anyone who understands what its like, and i dont think that will ever change unless somoene has been through it themselves, its crazy when you hear these football players, hockey players, athletes , who have had concussion problems and end up killin them selves or drug over doses, i don't think my problems are nearly as bad but i can understand why they do it now....

Sohitd,

I sure gained a lot more compassion and belief in how some players can have devastated life's due to head trauma after my accident...I highly doubt they fake it now.

Grace,

I hope the new med works out and enjoy your summer with your kids.

Bud

The only people that understand what we are going through are the people that have gone/are going through this. I have a couple of friends that are former/active military and one of them blew up on an IED in a humvee. He went through hell with his injuries on top of PCS.

He "gets" me whenever I describe a symptom to him without me even completing a sentence. He was in special forces and all those guys are obviously super macho types. He had a very hard time explaining why he couldn't do certain things after his blast injury and was made fun of on many occasions by his superiors and fellow soldiers.

But honestly, if I haven't gone through PCS, I would never understand it. I always thought that you can push through anything mentally and physically. Never understood why people behave a certain way being on some of the heavier medications, or why you can't just "lighten up" and push through anxiety/depression.

My family/friends still don't get it even after several years have passed now. I've heard everything from "you're just allergic to work" to being asked to "try and be a normal person for at least a day" for a wedding or a birthday outing.

Sometimes it's kind of a catch 22 - I would go and suffer through someone's birthday at a loud restaurant and then people would assume my condition is much better now and be upset when I decline an invitation to a party or other event.

Same goes for pretending to look normal, people assume you're fine and are upset when you refuse to do something.

Just like Bud said, I have a much better understanding and compassion for people with chronic diseases, not just PCS.

I don't really blame people for not understanding, it's human nature. No matter how many times a woman will tell me how horrible it is to give birth, I will never understand it, same with these chronic conditions.

You made a lot of good points, My response to the "you just don't want to work" is just putting it in perspective for them. I remind them how much I liked my job and how many hours I put in, and most of the time it sets in for them that if I was healthy I would be working!

The worst is when you just plow through an event or party just to be there, and you do a really good job of hiding how you are really feeling. No one sees you the next two days, hardly able to do anything. I recently when to a graduation party, and had to explain to some people I had not seen since high school what was going on. They simply said, "that it was seven months ago, how could it still be affecting you?"

I think what tops my list was when someone in my family suggested that I shouldn't be dating someone, because if I could handle having a girlfriend than I could be in school or working. I thought to myself, God forbid I could actually have someone to help me get through this who isn't judgmental.

Isn't PCS just one big catch 22? Ha

I do the same when asked about work. I tell them how much I loved my job. I loved my day job because I loved the people and it was a constant learning process, and I loved Mortgage brokering, which I did as well, because I love helping people. ...

Anyways, when I talk about how much I loved it, people seem to understand better. I Wish PCS wasn't in my life, but like most people, I didn't understand concussions and didn't even know PCSs existed. I wouldn't have understood if I had known someone going through it.

I'm thankful that I Do understand better now, and can help someone who is going through it, just be understanding. That was the hardest part for me was no one understanding, and not even being able to explain it myself.

The "you look great" video series did the job of explaining For me, thank goodness. I had my mother watch it, and suddenly she was different and more understanding. I felt like I could talk to her again.


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Disclaimer...lol....I never actually Stopped talking to my mother. Ha


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The difference was, before the video series, you could talk TO your mother. Now, you can talk WITH her because she understands the conversation. Big difference. Good for you.