A lot of people misunderstand me when I say “I’m tired”
I don’t mean “hey I’m tired and I want to nap” or “gosh I shouldn’t have stayed up so late last night”. What I do mean is that I am physically/mentally exhausted and do not have any energy. My body won’t allow me to go any further and it is screaming at me to get back in bed. It means I need to rest and recharge. It is hard to communicate all of this when mentally and/or physically exhausted and it requires more energy than is currently available to do so. So I just say I’m tired.
“Well you don’t look sick” or “You look fine”
Well you didn’t look rude either but here we are. And no, its not really a complement. Like at all. It’s actually really invalidating. What does it even “look” like to be sick? Maybe what you meant to say is that I don’t fit your expectation of what a “sickly” or disabled person looks like. There are a lot invisible disabilities and conditions out there but it doesn’t make them any less valid or life altering than any other disability/condition/illness that you can physically see.
He/She/They are always asleep
Chronic illnesses are exhausting. Personally, there are a lot of days where I wake up physically exhausted. Some days I have a lot of energy to spare and sometimes I don’t. Some tasks take more energy for me than it would for someone who is non-disabled. Sometimes I only have enough energy for that one task and I need to sleep. And sometimes, I just need to fucking sleep. Again, energy is a precious commodity and I have to be aware of how I use it.
“You’re perfectly healthy”
That really depends on what you would define as “healthy” but go off I guess. By the most common definitions based on tangible measurements of health, sure I am “healthy”. But obviously there’s something wrong when I physically cannot move my body or wake up feeling exhausted or spend some days sleeping because I don’t have energy, I mean do I really have to keep going? In reality, sometimes I am healthy and sometimes I’m not. Just read the article I linked, it’ll make more sense then.
You’re too young to be tired or We didn’t do anything or you can’t be that tired
No not really fam. Having a chronic illness means that you have a limited reserve of energy than those who are able bodied have. There are days when that reserve of energy is larger and you can use it to do many tasks. There are also many other days where one task uses a large amount of that energy. On those days I take a shower, get dressed, eat breakfast, and realize that I don’t have the energy to do anything else so I just spend the day in bed. Sometimes I don’t even have the energy to do anything besides eat. Take a look at energy and fatigue.
You need to get a doctor’s note
Ooof this one triggers me every time. Doctor’s notes are pretty pointless. Sure I could go to the doctor and be like “hey I need a note from school because I missed class, work, whatever” and they’d take one look and go “sure, but what’s wrong with you?”. It’s not like when you have a cold and they treat your symptoms like the runny nose or nasty cough. As you can imagine, there are no physical, visible symptoms (most of the time). Unlike a cold, there is no medicine or treatment they can give me to make it go away. I will have Periodic Paralysis for the rest of my life and there isn’t anything that I can take to make it suddenly go away. The symptoms will always be there undetectable under the radar. The doctor would check me out and be like “you’re perfectly healthy, there’s nothing wrong with you”. AND in most cases I can’t even get to the doctors office. You know why? Because I cannot move my body, and even when I can I am not coherent enough to drive. It definitely isn’t worth the effort to get there and be told there isn’t anything wrong with me or have them tell me something about my health that I already know.
“You’ll just grow out of it”
For some conditions either you have it or you don’t. This is one of them. Periodic Paralysis is genetic, there’s no growing out of it. If anything I grew into it as I didn’t start having symptoms until I started puberty. I really wish it were that simple, but it’s not. Check out basic info.