Follow up from "Did I act appropriately - or was I just reacting to my pain?"

Following my experiences described in my previous posting, it is time to try and establish a greater awareness of Chronic pain, in the hope the day to day problems we encounter receive some recognition and hopefully, assistance when possible. An awareness wristband has been created and available from a famous online auction site (search for: Chips or Pain wristband) There is also a link to a CHIPS awareness website with useful links. Thanks. ps. apoligies if this is deemed to be inappropriate for the Healthunlocked site.

10 Replies

  • Hello BOB here

    Was this to do with the lady in the shop, regarding a television, she was also a chronic pain suffererer.

    When we suffer from a chronic condition we all have a problem, and lash out, we all cannot see the skin the other person is wearing as they cannot see the pain that you are hiding

    Remember, chronic pain cannot be seen although a limp is a disability We need to bite our tongue in the first instance and then explain that we have needs, mind after that I have a tendency not to stand by the second time

    A disabled person can prove to be their worst enemy on so many occasions and this gives the state an excuse to use us as all as a punch ball in the eyes of the able bodied. So we the disabled can end up in a worse situation than we were. So we all end up losers in an uncaring society.

    There are so many conditions that we all cannot see, so it is no use calling another person with a disability If we cannot call ourselves. Both parties are disabled and we leave it as that.

    All the best


  • I can't find your previous post. Could you point it out for me please?

    I do however have a few life observations about any disability whether CP MH or my own sight loss.

    People who have anything different about them spend tine nnoney and effort trying to look and behave 'normally' so as not to draw attention to themselves. We are pack animals any weakness in that structure is seen as a weakness and to be eliminated. We are not wild animals but the instince to be as everyone else still remains.

    The stereotype of any disability is either a wheelchair, Blue badge symbol, or Guide Dog. That immediately identifies you as being different and probably requiring help.

    David for example tried not to use his wheelchair and retain some independence. He still has CP and all the problems as before but his 'identity' ha gone. No one can 'se' he has a disability.

    No one can be excepted to know that you hurt. In the same way they wouldn't kow you had toast for breakfast or your Granny was at the dentist.

    Tolerance of each other and common courtesy is something sadly missing from our society now. Bt you smile and say thank you to someone and you will get far better results.

    Identifying tags are not in my opinion a good idea. You are showing to others that you are vulnerable. In the same way many blind people no longer carry their white symbol canes. They are open to abuse and robbery.

    I feel someone is cashing in on others disability and lack of confidence.

    Phew! Thank you for listening.

    Pat x

  • Hi, Thanks for your reply. The previous posting is in the 'Questions' section, approx 6 pages back.

  • I usually find that any one with a guide dog gets lots of good and helpfull attention. One lady trying to do some shopping in M&S in a wheelchair with a puppy labrador companion was the most talked to person in the store. All bEst wishes Helen

  • Paton, I agree although I think historically if you were unable to pull your weight in society, you got left in the cave, or gutter.

    Less historically children with disabilities and conditions were herded together in special schools, so genertations grew up not socialising in the world. I remember doing work experience in the Spastic School. Yes, that is what is was called, even the name was abusive.

    Its only recently that abled world is trying to make life easier for the disabled. Sometimes they get it right but the times they get it wrong is due to lack of understanding. Lack of understanding brings out intolerance.

    If I meet new people I rarely mention my condition. Although when I am on a course, and I do many free ones, I do tell the facilitator, because I may need to stand up, or leave the room to walk for a bit. When there's roleplay to do, I try to get a role that suits me as sometimes its too much physically. Then I may just say, look guys my backs a bit sore today......... everyone understands back pain and I don't need to go into all the details of all my problems.

    Labels really don't help because even within a labelled group there is so much variety of ability.

    There is so much intolerance in the world against so many things. The Dali Lama once said that if all 9 year olds in the world were taught meditation, then violence and abuse would be wiped out in that generation. Such a simple thing one wonders why its not done?

  • Great to hear from others who feel that chronic pain is being ignored together with issues that go with it e.g lack of patience and loss of temper. We DO need someone with 'clout' to take up the cause! Our voices are too small in the NHS

  • Prehistoric remains have shown that disabled older people and children were lovingly cared for, one old person with crippling arthritis and rootless, had his food chewed for him. I don't believe that as a species we were all that primitive. People are mostly thoughtless and in a hurry, not intrinsically cruel.

  • You forget MONEY, that overrules all positive human emotion :-(

  • That should say toothless!

  • MONEY depends where you live. I now live in Scotland where I find no money culture. On meeting people in public places I say kindly and firmly "I am disabled by severe pain, it would be helpful to me if..." and generally people respond well. I do look completely normal. I have even been allowed to use (clean) trainers swimming pools because without I get much pain. Sometimes I explain how "in normal people when focussing on a task their other neurotransmitters shut down and rest but in me all my transmitters keep firing which makes it hard to think straight, which can make me irritable, for which I apologise in advance." What is CHIPS? We can't even agree on a name! Mine is central pain state which is more like post stroke pain but caused by TBIs, than it is like CRPS.

You may also like...