Things The Chronically Ill Are Tired Of Hearing
1. You don’t look sick
More than often people with chronic illness have gotten used to hiding the pain and the symptoms for the simple reason they are tried of explaining it. Others as in my case, are so that loved ones don't constantly worry about them. After years of pain or sickness you simply get used to being in that state and you no longer "look sick". As well there are many conditions that don't have outward signs of illness. This does not mean the person is not suffering. A final note on this is "what does sick look like"?
2. You’re too young to be sick
I've seen children at the age of 5 who where very sick, in fact sicker than I am. There is no age that you need to be before you become sick or before you can feel pain. No one is safe and it can happen to anyone. Chronic illness does not discriminate based on anything.
3. Everyone gets tired
Yes they do, but the vast majority of people spend most of their waking time not being tired. For the chronically ill, being tired all of the time is common. No amount of rest can cure it. Coffee or other things won't snap you out of it. You are simply fatigued and sometimes to the point you can't even have a shower. This may be the hardest thing for the able bodied to understand.
4. You’re just having a bad day
If only that was true. Imagine if you will having a "bad day" for 10 or 15 years non stop. Also imagine if you where in pain or tired to the point you can hardly funtion this entire time. It's not just a bad day it's a way of life for the chronically ill. The good days are rare and all to far apart.
5. It must be nice not having to go to work/school
The majority of people I know with chronic illness would love to be able to work or go to school. The fact that that feeling of being of use and needed is denied us is one of the worst parts of illness mentally. It is often a deep part of the depression that comes along with being sick or in pain for a long time. The suffering hits you and the lack of ability to work or go to school hits you as well. It's not a vacation, it's a never ending punishment.
6. You need to get more exercise
For the chronically ill, it is often very painful or they are simply lacking in the energy needed to do this. For myself, walking in the store to get my supplies for the month can cause me to be in distress. The fact is I often have to stop mid way and just stand there and recover for a bit. As well exercise can make pain much worse or in some cases cause conditions where your life is in danger.
7. I wish I had time to take a nap
This is a very pointed thing to say to the chronically ill. The nap is not because we wish to it's because we simply can't stay awake any longer and need to recharge after expending more energy than we should have. For some of us we will literally pass out if we don't take that nap, so it's not an option.
8. The power of positive thinking
Positive thinking can improve the mood, but not one person have used it to heal themselves. I'm sure you can find people telling you that you can but they are often trying to sell you something. All the positive thinking in the world can not make a sick person better, it can only make your mood better. Trust me I am a lot more "positive thinking" than most people I know and I've suffered for 18 years now.
9. Just push through it
As stated before, if a person who is chronically ill tries this they are putting themselves at risk. To force yourself to finish something or to do something you can't normally do - you run the risk of hurting yourself and or passing out. For some it could be life threatening to push past the point where your body tells you to stop.
10. It will get better, just be patient
This often comes from the inability of most people to understand that chronic illness is almost always a life long event. There is no getting better. The most we can hope for is good days and for treatments that cause us to be a little more functional.
11. Have you tried ____
More than often we have tried it all. I have been in this situation for 18 years of my life every day and I have tried every form of pain management there is available. Not one thing has taken the pain away. Often with pain medication you need to take more and more of it over time. With the kind of medication needed for this level of pain, that can cause toxic results to your body and put you in danger. That being said, YES I've tried it.
12. You should stop ____
After a while unless you have a cognitive disability, you learn what you can and can't do. I had one person tell me "stop drinking coffee". Well it's not like I did not try that in the past. Coffee does not effect my disability one way or the other. In fact it hardly works on me as a stimulant. Trust me after a few years or more, people have come to realize what can and can't be part of their life.
13. It’s all in your head
Actually it's all in my body. If it where all in my head that nonsense about positive thinking would work but it won't. There are a small number of people out there that are mentally ill that manifest it as a physical illness, but that is not at all common. The majority of chronically ill people have been told this nonsense and even treated that way by doctors (and the doctor should no better). If I had $10 for every time I saw a so called doctor tell someone there is no CFS or Fibro - I'd have a new house by now.
14. You need to get out more
Being out when chronically ill can be a dangerous this. If you flair up and you are not in a place where you can rest you are in trouble and can be hurt because of it. All the fresh air in the world won't help. All the "seeing other people" in the world won't help. This is just another form of "think positive" basically.
15. You take too many medications
I review my medications and the doctor removes the ones that are not needed. I take only what is needed to help me be a able to get threw the day. Medication keeps me from being in bed all the time and in fact is keeping me alive at this moment in time. The other form of this is "you need to use natural medications" - trust me I tried that and it did nothing of use.
More than often people with chronic illness have gotten used to hiding the pain and the symptoms for the simple reason they are tried of explaining it. Others as in my case, are so that loved ones don't constantly worry about them. After years of pain or sickness you simply get used to being in that state and you no longer "look sick". As well there are many conditions that don't have outward signs of illness. This does not mean the person is not suffering. A final note on this is "what does sick look like"?
2. You’re too young to be sick
I've seen children at the age of 5 who where very sick, in fact sicker than I am. There is no age that you need to be before you become sick or before you can feel pain. No one is safe and it can happen to anyone. Chronic illness does not discriminate based on anything.
3. Everyone gets tired
Yes they do, but the vast majority of people spend most of their waking time not being tired. For the chronically ill, being tired all of the time is common. No amount of rest can cure it. Coffee or other things won't snap you out of it. You are simply fatigued and sometimes to the point you can't even have a shower. This may be the hardest thing for the able bodied to understand.
4. You’re just having a bad day
If only that was true. Imagine if you will having a "bad day" for 10 or 15 years non stop. Also imagine if you where in pain or tired to the point you can hardly funtion this entire time. It's not just a bad day it's a way of life for the chronically ill. The good days are rare and all to far apart.
5. It must be nice not having to go to work/school
The majority of people I know with chronic illness would love to be able to work or go to school. The fact that that feeling of being of use and needed is denied us is one of the worst parts of illness mentally. It is often a deep part of the depression that comes along with being sick or in pain for a long time. The suffering hits you and the lack of ability to work or go to school hits you as well. It's not a vacation, it's a never ending punishment.
6. You need to get more exercise
For the chronically ill, it is often very painful or they are simply lacking in the energy needed to do this. For myself, walking in the store to get my supplies for the month can cause me to be in distress. The fact is I often have to stop mid way and just stand there and recover for a bit. As well exercise can make pain much worse or in some cases cause conditions where your life is in danger.
7. I wish I had time to take a nap
This is a very pointed thing to say to the chronically ill. The nap is not because we wish to it's because we simply can't stay awake any longer and need to recharge after expending more energy than we should have. For some of us we will literally pass out if we don't take that nap, so it's not an option.
8. The power of positive thinking
Positive thinking can improve the mood, but not one person have used it to heal themselves. I'm sure you can find people telling you that you can but they are often trying to sell you something. All the positive thinking in the world can not make a sick person better, it can only make your mood better. Trust me I am a lot more "positive thinking" than most people I know and I've suffered for 18 years now.
9. Just push through it
As stated before, if a person who is chronically ill tries this they are putting themselves at risk. To force yourself to finish something or to do something you can't normally do - you run the risk of hurting yourself and or passing out. For some it could be life threatening to push past the point where your body tells you to stop.
10. It will get better, just be patient
This often comes from the inability of most people to understand that chronic illness is almost always a life long event. There is no getting better. The most we can hope for is good days and for treatments that cause us to be a little more functional.
11. Have you tried ____
More than often we have tried it all. I have been in this situation for 18 years of my life every day and I have tried every form of pain management there is available. Not one thing has taken the pain away. Often with pain medication you need to take more and more of it over time. With the kind of medication needed for this level of pain, that can cause toxic results to your body and put you in danger. That being said, YES I've tried it.
12. You should stop ____
After a while unless you have a cognitive disability, you learn what you can and can't do. I had one person tell me "stop drinking coffee". Well it's not like I did not try that in the past. Coffee does not effect my disability one way or the other. In fact it hardly works on me as a stimulant. Trust me after a few years or more, people have come to realize what can and can't be part of their life.
13. It’s all in your head
Actually it's all in my body. If it where all in my head that nonsense about positive thinking would work but it won't. There are a small number of people out there that are mentally ill that manifest it as a physical illness, but that is not at all common. The majority of chronically ill people have been told this nonsense and even treated that way by doctors (and the doctor should no better). If I had $10 for every time I saw a so called doctor tell someone there is no CFS or Fibro - I'd have a new house by now.
14. You need to get out more
Being out when chronically ill can be a dangerous this. If you flair up and you are not in a place where you can rest you are in trouble and can be hurt because of it. All the fresh air in the world won't help. All the "seeing other people" in the world won't help. This is just another form of "think positive" basically.
15. You take too many medications
I review my medications and the doctor removes the ones that are not needed. I take only what is needed to help me be a able to get threw the day. Medication keeps me from being in bed all the time and in fact is keeping me alive at this moment in time. The other form of this is "you need to use natural medications" - trust me I tried that and it did nothing of use.
That is one honest and very real post. Since being in daily pain for a number of years now, and now suffering with mental illnesses, I can relate very much with the majority of this. I remember seeing one of the doctors at my surgery ( the main doc there) and being spoken to in such a way that he was pretty much saying the chronic pain was all in my head. I refuse to see him now if possible. He made me feel like crap.
ReplyDeleteYou are so right about getting used to 'putting on a mask' so people don't see your pain. I have got so used to that over the years. Unless its really bad when I cannot avoid showing it. My work assume, every time Ive been off sick its been because of my back injuries. In reality, only once has it been my back. It really pisses me off when they automatically assume its my back. I know they are looking for a reason to get rid of me because of it but they cant. I would screw them.
Recently my mental illness has gotten worse ( as Ive mentioned in my vlogs), and tiredness is there all the time now and starting to cause concern. Im seeing a doctor soon and thats one of the things I need him to investigate. Ive have never had this before. Same thing happened last year then eased off by itself. This year its come back and even worse. Just normal day to day stuff totally wipes me out.
Anyway, enough of my moaning on, hope you are ok and have had a good weekend. Take care my friend.
The tired thing can be a lot of things some really not good So best to it looked at. I hope it's simple. My anxiety is bad this last 6 months. Strange thing is it's always at night and mostly at home. Oh well. The doctor won't give me anything for it so I'm screwed.
DeleteWhats his excuse for not treating it. He is supposed to help you with health problems.
DeleteOne thing someone mentioned to me to get checked for was M.E. From what Ive read, it cannot be diagnosed video blood tests etc, just matching symptoms
He wants me to see someone also for it. But all shrinks are not that good.
Delete