For those who genuinely care about a person in chronic pain, please listen. Life with chronic pain is hard. If ordinary life is difficult imagine having pain to deal with on top of that. A person always hears from society "go" and "do". This is inevitable. But it is right to expect empathy. The load a person carries on their shoulders should depend on how much they are able to carry.
If a person with chronic pain is not active and spends a lot of time "relaxing" please remember that it only is "relaxing" for a person who is fine. Can someone with chronic pain ever really relax? Are they not always tense expecting the next 'bad one'? I speak from experience. All these things that would normally be like 'having a good time' turn into mere distractions from that in-evictable tenant. But when he wants he will take hold again. Like a rider taming a horse.
But it is not all over. We are fighters, just give us a chance. If you really care, help us do what we wanted but thought we couldn't. We can achieve our potential if we are given support. While we have not mastered our condition, while we are still the horse and the pain is the rider, we will have to adapt to it, and so will society.
Schools are too demanding. They want evidence that a person is not well. Like I said in a previous post, if there is no bandage there is no empathy. I have experienced it myself. Do not force your child to continue a 'normal' life. How many have been lost, gone forever from this world, from being pushed too far. Seek government funded tutors that come to your home or private tutors. If it is too painful to continue education, better skip a few years and see how it goes. Health comes first.
Do not trust the doctors that say it is normal to live in pain. They want us to continue to work for the benefit of society at our own expense. Pain is a signal that something is wrong. If everything has been checked and nothing found, it means it is either not yet discovered or, as in my case, genetic. Continue to search for other doctors. While the link between pain and suffering has not been broken, there simply must be something we can do in the mean time.
If a person with chronic pain is not active and spends a lot of time "relaxing" please remember that it only is "relaxing" for a person who is fine. Can someone with chronic pain ever really relax? Are they not always tense expecting the next 'bad one'? I speak from experience. All these things that would normally be like 'having a good time' turn into mere distractions from that in-evictable tenant. But when he wants he will take hold again. Like a rider taming a horse.
But it is not all over. We are fighters, just give us a chance. If you really care, help us do what we wanted but thought we couldn't. We can achieve our potential if we are given support. While we have not mastered our condition, while we are still the horse and the pain is the rider, we will have to adapt to it, and so will society.
Schools are too demanding. They want evidence that a person is not well. Like I said in a previous post, if there is no bandage there is no empathy. I have experienced it myself. Do not force your child to continue a 'normal' life. How many have been lost, gone forever from this world, from being pushed too far. Seek government funded tutors that come to your home or private tutors. If it is too painful to continue education, better skip a few years and see how it goes. Health comes first.
Do not trust the doctors that say it is normal to live in pain. They want us to continue to work for the benefit of society at our own expense. Pain is a signal that something is wrong. If everything has been checked and nothing found, it means it is either not yet discovered or, as in my case, genetic. Continue to search for other doctors. While the link between pain and suffering has not been broken, there simply must be something we can do in the mean time.
