People with an invisible illness often have to deal with suggestions and advice that imply they are not really sick, rather they just aren’t trying hard enough to get better. Sometimes people are genuinely trying to be helpful, but they don’t take the time to learn about the illness before giving their advice.
I thought I would post a comment exchange I had with a very condescending individual who had the cure to my incurable illness. I’m hoping if you read this, you will more carefully consider how you treat someone with an illness you can’t see.
Mr. Helpful’s “advice” is bolded…
You don’t know me, but I don’t know you. Here’s the thing about lying down in bed all day - it conditions you to not be good at any physical activity. Your body will slowly decompose while you are in it, and it will give up on you. Your body is telling you it wants to die, and you are obliging.
Don’t give in! Fight the good fight! Try to walk a half a mile every other day. Then every day. Then a mile! And so on! Soon, your body will stop being suicidal and you can go outside like a real boy and not have to neglect your puppy anymore!
Hurray! Imagine how many movies you can sit at! Hint: regular humans view sitting as the least active activity there is. I can’t wait for you to join us there!
Good luck in your life adventures!
You are correct. You don’t know me. And you don’t know my medical condition. When your body does not produce enough energy to power your muscles, lying down is pretty much your only option. There is no willpower. No fighting the good fight. You can’t use your mind powers to move a car that is out of gas. Why would a body be any different?
That said, I do not go without physical activity. I walk Otis several times a day. Don’t you dare say I neglect him.
This was condescending bullshit.
No offense taken, don’t worry! Here’s what I know:
Try to walk for a bit!
That’s all! It’s easy! Pretend it’s a game. Pretend each step you take is a follower you’ll gain! Incentivize! I’m not saying you are not a sleepy fellow; I’m sure that is true! I am just saying you should also try to do more! Just for funsies!
Keep a walkblog! Day 1: 1 step! Day 30: 30! Eventually, you will be up and at ‘em and learning how energy works! Muscles don’t move by default - they need to be conditioned by exercise, not magic mind control! #TheMoreYouKnow
You really shouldn’t be giving health tips to people with illnesses you have no understanding of. For instance, chronic fatigue has nothing to do with being sleepy. The cells in my body do not produce enough energy. It’s like running a house with a car battery. I have wakeful periods and sleepy periods like everyone else. My exhaustion is constant.
Short periods of low impact exercise can help people with Chronic Fatigue Syndrome keep muscle tone and increase physical stamina. But too much exercise can actually be dangerous. If you use up all of your fuel, your body will give out. I have personally collapsed 3 times. Once in the shower and I very nearly hit my head. Your advice is similar to telling someone with a broken leg to do jumping jacks.
Chronic Fatigue Syndrome is an untreatable illness. No amount of exercise is going to fix me. If that were the solution, a few million people with CFS would be signing up for gym memberships as we speak. No one would willingly live with this illness if they had an out.
I walk my dog and do as much physical activity as my limitations allow. I am extremely insulted that you said I neglect Otis. He is well taken care of at all times.
You really shouldn’t be giving up so easily! I am only trying to help! I am sure that Otis is very well taken care of by your parents, I did not mean to insinuate otherwise.
I come bearing more Science! Muscles get stronger the more you use them - this is great insight into how to begin your journey. For instance, you could just start by walking around the house. That way, your family could watch and make sure you don’t collapse and get hurt. If you begin to get tired - which means it’s working, and your body is getting stronger - you can stop and try again in a bit, in the safety of your own house! You don’t have to do a sprint, just baby steps. Even if it’s slowly, your body will adjust, and health will be on the horizon!
Let’s hypothesize for a moment that you are right, and that bodies are made of magical energy points and that muscles are a myth. How then will your gastric bypass or whatever other surgery benefit you at all - won’t that just make you skinnier instead of healthier? I don’t understand why you would spend your time and money on that surgery if it’s a lost untreatable cause.
What makes you think I’ve given up? In the dozen years I’ve been sick I have done everything from taking powerful drugs, exercising to my detriment, shock therapy, stimulants, and I put myself in debt trying holistic measures. I have fought this with everything I have. You don’t know me and you do not know what I’ve been through so stop making bullshit assumptions.
I also do my fair share to take care of Otis. I walk him, I feed him, I play with him, I even get up at 3am each night so he can pee. I don’t just pass him off on my parents.
Also, your science is shit. Muscles require energy no matter what their strength is. If you have no energy to power them, you cannot make them stronger. I do not just lay around the house. I do as much physical activity as my body allows. The part you do not get is that there is a limit I cannot go beyond. It could cause me to collapse. It will also cause an energy hangover that could last for days. Then I wouldn’t be able to do any physical activity at all.
Health is not an option for me. This is an illness that has taken down professional athletes. If exercise were some magic answer then they would have never gotten sick in the first place.
The surgery would help because it would reduce my mass. I would be lighter which means my muscles would use less power to do the same amount of work. It will decrease my limitations, but it will be nothing near a cure. I will not be healthy. I will still be sick every day of my life.
You do not know what you are talking about, so please stop treating me like a 4 year old.
I think I honestly prefer when the trolls just call me fat and lazy.