Things you wish weren't said or assumed about your health conditions (seen or invisible)

@ScrabbleBrain

What a beautiful post 🩷🤗

I had a spinal operation and thankfully it was successful and I had to learn how to walk again.

But when I'm walking slow or not doing as much as others my age, people judge.

Cold weather flares up pain in my back.

It makes you nauseous and tired but people assume you are over egging it.

Or people assume you are lazy, if you choose not to carry heavy loads etc 

I had to go for an x-ray recently but x-rays don't show pain, I didn't know which room to go to and was waiting patiently for someone to call me, the nurse came and said, someone as healthy as you is hardly waiting to be pushed in a wheelchair. You can walk , but I wasn't waiting for her, just to be directed where to go.

When she pulled up my top to get the x-ray and saw the severe scarring on my spine, she was mortified and tried to backtrack but I told her politely she could shove her apology 🥺🩵

@ScrabbleBrain

I definitely would choose the eggs and onion rings, if my breath affected the date, fairs 😂😂😂😂

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@ScrabbleBrain

 Pain is subjective. There’s so many things that cause it. Nerves, bone, muscles. 

I had surgery on my neck in May. Often I feel others expectations are for me to poof 🪄 Not have pain. 

Let me be when I need to lie down with my heating pad!! I’m not trying to be lazy, I would just like some energy for the remainder of the day. Gotta refill the tank. 

I’m not Wonder Woman Despite the possible rumors 😁

@ScrabbleBrain 💗 

@ScrabbleBrain

thank you for posting this can agree with all them we have many unseen health issues that make it very hard most the time 

we also overweight' due to not being able to do a lot even walking hard for us  what we hate the most is comments on  using the motorized  carts at stores we heard people say if she just walk loss weight she not be using that or she fat not disabled so she just being lazy  we heard both a lot

so we in pain 24/7 tried  many things over the years yes some of them  help a little but not much at all we heard even doctors say things like we tried  everything that might help nothing more we can do or your case is so complicated  due to all your health issues 

so we have this issue chronic  pain part of a daily thing for us but people always  assuming things that just not true

what even more sad is there a mental health club we can go to but it not really physical disability  friendly' so can not go most the time due to our physical  disabilities  but again seeing we not look disabled even their we judged  and they not get why we not coming

the clubhouse' for us in about 40  min away they come get us in a van the ride to and from the place is hard on our body.  then when you get there you sit on hard chairs and to do most the stuff your standing and or walking  so all that very hard on us  we talked to our therapist  about this at community mental  health and she agree with us she even went to others about this but nothing seem to be done about this big issue

for us the big issue we have is we isolated  mostly so the club would be very helpful for us but again we can not go due to our pain issues and physical  health disabilities  we to go to socialize  with others but  can not go way it is right now  so even within the mental health system  they really lacking  understanding of us that live in chronic  pain 24/7 

so we can relate to this post a lot 

@ScrabbleBrain

Hi Scrabble! 😊 ❤️

I cannot thank you enough for your incredibly heart felt, well written forum post! 😊❤️

Just wow! 😳 Just sayin', this one highly resonates with me and "hits me right where I live". Thank you for validating many of our thoughts, feelings and emotions. Your post is so incredibly astute and it gives us words for how it is that many of us feel. 

Feels like an anthem for the ill, the ones that live with chronic pain and especially the ones of us that what we suffer from, is quite invisible to others, as you mentioned. 

Sure, I may look like the embodiment of health, physically fit even. To look at me no one would know the chronic pain that I have experienced since the age of nine. I knew it would be a life long issue and so I don't take pain medication. Sounds like a heavy load for the liver. Sometimes in life, things can be simply trading one problem for another. 

People have their limitations and for some people, that goes into the category of lacking empathy, compassion, judging others before knowing the full story. With acceptance comes peace. I accept that limitations in that area exist. I have a tendency to reduce my expectations of others. If I explain my physical limitations and it's not heard, understood, I simply stop explaining. Part of self care is refusing to argue with someone that's only purpose is to misunderstand you. 

I really do kind of get it though. If you see an individual that doesn't complain in an effort to not bother others, reaches for positivity consistently, is "fighting the good fight" and refuses to say "I am disabled" but instead says "I am this abled", the lines get blurred. Not showing outward signs to others like a cane or a wheel chair, well.... some people just don't get it even if that wheel chair might be in order some moments but you aren't ready to go there yet. 

It feels good to know ones self, know ones limits, to take physical breaks with the knowledge that many of us can over do things in that area. Not doing so means we are of use to no one including ourselves and our goals and you sure will hear lots of complaining from others that may have pushed you too far, incapacitated for days. They seem to get it then, when you can no longer move. 

It can be good to set boundaries, tell others "no", stop explaining yourself for reasons of self preservation, and focus less on what others think. I simply think to myself how others can operate....oh, well that's just a paper cut. Well, maybe it kind of hurts when it's your paper cut? People can be quite flippant and self absorbed at times. This is no paper cut that I live with and I hope none of you let another tell you that you simply have a paper cut either. 

Keep rockin' the house sweet souls! ❤️  You got this!!!! 

*high fives* 😊 and big *hugs* ❤️

I can relate to a lot of things posted here. There is so much ignorance that many of us have to put up with!

My parents used to say #8 to me all the time when I was little because I liked sitting inside with the air conditioning on reading books all summer. I was then semi-diagnosed with CHARCOT MARIE TOOTH, A muscular dystrophy and neuropathy that affect my peripheral nerves in my legs and hands, at the age of twelve. They continued on with it until I got my first job at sixteen and the genetic testing that officially confirmed my diagnosis. I wasn’t being lazy standing running jumping and playing caused me pain. They would continuously tell me to get off the ground if they caught me sitting outside reading in the mossy patches we had in the yard or if I was sitting in the sandbox my dad built for the pool to sit on. It wasn’t laziness I just masked my pain a lot.

My parents used to say #8 to me all the time when I was little because I liked sitting inside with the air conditioning on reading books all summer. I was then semi-diagnosed with CHARCOT MARIE TOOTH, A muscular dystrophy and neuropathy that affect my peripheral nerves in my legs and hands, at the age of twelve. They continued on with it until I got my first job at sixteen and the genetic testing that officially confirmed my diagnosis. I wasn’t being lazy standing running jumping and playing caused me pain. They would continuously tell me to get off the ground if they caught me sitting outside reading in the mossy patches we had in the yard or if I was sitting in the sandbox my dad built for the pool to sit on. It wasn’t laziness I just masked my pain a lot.