Would anyone want to wear something which showed you are a chronic pain sufferer?

[rowantree]

This occurred to me whilst reading the design project people's info. I'm not sure if I would wear something. I'd like people to know, and sometimes I wonder about getting one of those charity wristbands that show support of a charity. But would I wear something that said "I'm in pain". Or "I have an invisible illness/condition" or something more subtle that only other chronic pain sufferers knew. That appeals to me more I think. Maybe...

[blacky000]

Hello there rowantree just noticed your bandage what have you had done?

[rowantree]

De quervans release- tendonitis both wrists. Bandages off now. Healing well. So good to have so much less pain in wrists. Just my feet left now!

[teadrinker]

I spend a lot of my time trying to distract myself from the pain so I don't think wearing something would help with that, but that's just personal choice. I am also likely to forget to put it on!

I could see that it might be useful if you've got chronic pain but no obvious reason for it - how many times have I heard, "Well you look ok..."?! I suppose it might be useful to carry some personal info around eg medical condition / medication used / other things that help. And I know of people with all sorts of medical conditions and "hidden" disabilities who carry around small cards with that sort of information, for use in emergencies.

Depends what message we want to convey to other people. I wonder if people would be more understanding, or give us a wide berth in an effort to avoid having to help?

[tettridge]

Hi

I am also intrigued as to the reaction of people, giving us a wide berth or try to help. In my experience I think it has been about 50/50 when in my wheelchair and shopping, some people will actively watch me struggle to get something as if they think that the effort will help me.

I just do not get people, the ones you think would not give you the time of day more often than not are the 'helpers' and vice-versa.

I really do not think it would change anything as the ones who help now are usually the ones clued up on the badges and wristbands so would help no matter what.

With regard to Rowantree having both carpal tunnels done at the same time, That is a brave person, I have had mine done but over a period of years between each as I could not imagine being so helpless with both hands bandaged and having to rely on someone to do everything for me, that is a scary thought,

I am needing my wheelchair more and more now but at least I can still do most things, I buy elasticated waist trousers so I do not need to do zips and I live in polo type shirts that just pull over my head and slip on shoes with no socks.

If we have to go to an occasion then my wife does everything for me from putting on socks to zipping my fly and doing the buttons on my shirt and doing my tie. so now I hate the occasions as I feel so down about the whole getting ready stuff.

I know she likes to do it for me but it is this 'man thing' that I have trouble with.

Take care and good luck with those hands

Kindest regards

Terry

[Suedub in reply to tettridge]

Hiya,

This is my first reply, im with you on the feeling so down when you have to rely on your other half to help you get dressed it feels so deeming its even worse when you 7yr old daughter has to put ur sock and shoes on i hate it. Ive only just recently become unable to do all this stuff i was fine and managing the every day tasks had to use a walking stick but ended up in hospital for three wks and now im housebound and have to use a zimmer in the house have using crutches but can go far, sorry should say whats wrong with me, i had a double discectomy L2&3 10yrs ago about 4yrs ago things started to go downhill again and have been in CP since then recently everything's just go worse iv got spinal stenosis, DDD, arthritis and my spines crumbling its such a mess down there tat they cant do anything cos my nerves are in hyperdrive and the muscles in me neck and back are in constant spasm, so it just pain management ect but they wont tell me if i will be able to walk far which i cant but they wont give me a wheelchair I cant go anywhere its doing me nut in, i just don't know who i can get help from i cant take my daughter to school and am running out of friends to call on have no family around and the huuuy has to work, im just feeling lost and scared and don't know where i can get the help i need sorry that was a big rant didnt mean to this is my first time on here ahh well its done now sue

[rowantree in reply to Suedub]

Sue, you've come to the right place. Rant as much as you need. We are here to listen, offer support and suggestions where we can.

[Suedub in reply to Suedub]

I'm in the same boat with the gammie back two ops down and more to come also on crutches but got a scooter with me dla which has mad a massive difference have been able to take her to school on tat. Iv got the cp plus nerve damage in both me lumber spin and neck. Is so hard kids having to help yea dress cook ect. Where do yea live iv been in contact with a young carers charity for the last 4urs and they have been great with the kids they get to go on trips ect during half-term and holidays which gives us all a break and respite. Add the adhd in and it just makes everything even more difficult. Hubby always at work aswell. There is help out there yea just need to look online for one near you.

[Bananas5]

Interesting as this question has cropped up before.

The majority of Joe Public only has the ability to identify with 2 types of disability,

People in wheelchairs which means they are paralysed or have no legs and Guide Dogs which means they can't see.

That is the sreotype even though we all know there are many reasons who you use a wheelchair. And not all blind people use a Guide Dog.

In general the public are frightened of disabilities and don't know enough to offer help. If you meet someone either in a wheelchair or white symbol can - ask if they need help. Sometimes we do and sometimes we don't. Never jyst rush up to someone and propel them across the road.

If as a CP sufferer you carried some identifying band - would anyone apart from another user have the faintest idea what it meant? No.

Yes carry medical card with drugs listed but really not sure of the point of ientifying yourself as a vulnerable person.

Pat x

[juliansmom]

I don't know. See I wouldn't mind raising awareness but I don't want to remind myself that I'm in pain. Its taken so long to make my pain a part of me and not the whole of me. The more I think about it the worse it feels and takes over but I don't mind telling people about my condition.

[Hidden]

Surely we are a person before a condition or illness. I'm not sure labels help anyone.

But making wristbands for sale to the general public as other charities do to raise awareness may be an option.

[pinknosedcat]

Hi, this is my first reply so bear with me...Dissemination of information about Invisible Illness and encouraging education in the general public is an ongoing, and as far as i can see never-ending project. If you are interested in pursuing it then google invisible illness. It's an American site I think... invisibleillnessweek.com/.

This is an issue that I would think is close to all our hearts, not just to educate people in general and raise awareness but also because we have needs that make functioning and interacting 'out there' in the real world problematic. I'm sure wrist bands would be a good idea, there are already T-shirts and other stuff out there if you look.

In terms of functionality, I found the easiest way to signal my invisible illness and chronic pain is to use a walking stick. I don't need support when walking, but I do need other people not to bump in to me and to move around me...it's the easiest and most effective solution I have found so far.

In terms of education, I think there are two main areas that need to be addressed...firstly, increasing awareness of invisible illness including chronic pain and secondly, educating the public about the nature of pain...I can't tell you how many times I've heard people (including Doctors!) say to me...'it's only pain' 'everyone has pain, what's the problem?' etc. in my experience there is a dire lack of education and information relating to chronic pain but it is getting better, when I first got ill there was nothing online and now there is, that's a step in the right direction.

[sharelle]

This is something that I have raised in the past. For me it would be beneficial if I am on a busy bus and need a seat, or needing to use a busy lift as well as standing in a long queue with no chairs available to sit down. If I use my crutches I definitely get more consideration and have used them at times when not needed to ensure I get a seat which is wrong but I'd find it more embarrassing to say 'excuse me can I have a seat as I am in pain' as I am scared the response would be so what! A credit sized card or bracelet you can show would definitely be favourable to me

[pinknosedcat in reply to sharelle]

Sharelle, I used to feel exactly the same about using aids, not any more though. Don't feel guilty of embarrassed, you have nothing to feel guilty or embarrassed about. You are not responsible for the assault course of obstacles you face when trying to function 'out there'. Despite what many many people will want you to believe (even those that you are close to) you don't have to grin and bear it, you have the right to be angry and upset and you most definitely do have needs that outweigh the needs of a healthy fully functioning person. Why should you have to explain your personal medical information to strangers when using a stick will do the job?! I think the most emotionally uncharged way of looking at it is to think of it as a tool for the job. As far as I'm concerned my stick is simply a tool for communicating with other people that I have needs, that's all. It's all about living and functioning as best as you can under the circumstances you are in. Be brave and be proud that you are getting out there, forget about the embarrassment.

[kebsa]

I am more than happy about the idea of educating the wider community regarding the impact that living with chronic pain has on a person. that CP is rather different than the acute pain one gets with an injury for example but as others have said i think only those who already have a reasonable understanding would really get the message- preaching to the converted comes to mind.

I do have some concerns about wearing something that identifies us in general public for a rather different and sad reason. Sadly, there are those in the community that will do just about anything to get access to meds such as oxycontin, kapanol and other opiates and that will include identifying patients who are vulnerable and either putting pressure on them to part with medications or it can be more direct theft. I have a nursing background and used tp work for an organisation that provide palliative care for the terminally ill in their own homes. Sadly it was found that it did not take long for some drug seekers to see that the nurses were attending a patient several times a day, that may indicate to them that it was a palliative care patient and there may be opiates in the home- a terminally ill patient with perhaps just a partner at home make a very soft target! we stopped using vehicles that identified the staff as visiting nurses even though they did not carry meds in the cars, but they may lead the way to a vulnerable home. That was several yrs back and i am no longer working but we have had reports in news here in the last yr or so of increasing home invasions of the elderly and the disabled and certainly access to drugs seemed to be an issue in some of those (people growing dope for personal use to help deal with medical probs was one example).

One last thing to add, yrs ago the employer i was working actually arranged self defence training for us (nurses doing after hours home visits), one of the things that surprised me was one of the suggestions was obviously about calling out for help, making as much noise as one could if attacked- now that made sense! but the instructor went on to suggest that instead of calling out "help" it would be better to call out "fire"- the instructor insisted that when help was called for some would deliberately going the opposite way to avoid getting involved but if the call for help was "fire" they were more likely to investigate and see if they could help- seems sad but supposedly something that has been observed. I can't help thinking that if we made ourselves easy to ID as a chronic pain sufferer on sight, it may have a similar effect, some would deliberately avoid contact- the ones who don't understand that intractable uncontrolled pain that just never stops is different to the occasional headache that anyone gets perhaps when they are coming down with the flu. those who don't understand that the Cp is different are unlikely to change their minds about us, they will just avoid contact- perhaps thats not so bad, at least thats one less pain to deal with!!

the idea of things to raise community awarness rather than id a sufferer, is fine though especially when attached to fundraising drives etc

[pinknosedcat in reply to kebsa]

I think what you have said makes a lot of sense. Mostly i think the parameters need to be defined quite carefully. As you say there's nothing wrong with raising community awareness, nothing wrong with wearing a band or ribbon to aid this purpose but wearing something that ID's your specific med' status is wholly inappropriate, there are far too may vulnerable people out there. I'm not sure that we aren't facing similar problems here with those who would like to open up more of a debate about dying, in or culture it's one of those things that is inevitable but rarely gets discussed openly. I don't know the stats but would you say that a high percentage of the population will suffer from CP mostly as they get older? It seems to me that it's in a lot of peoples best interest to open a debate and that is probably the best approach when trying to educate others - this is something that will very probably affect you (the general 'you' out there :-)) and there are things you can do to help yourself. Forewarned is forearmed.

I think one possible reason for attitudes to chronic pain is to do with this idea of 'stiff upper lip', or what I call 'abuse' in any other terms. Living well is something that so many people are interested in but when it comes to living un-well not many people want to know, pity them, if they ever get ill they are going to have many more barriers to overcome.

[Hidden]

I am in chronic pain every, and have found that when I use my stick i get more consideration but on the other hand, I dont want people feeling sorry for me - so I now go without as I am sure there are a lot of people in pain today; so no I would not want a band to show I am in pain as I do not want sympathy

[rowantree]

I think I was thinking more of identifying myself to others in a similar position, and vice versa. To further the support of this type of forum, into the wider community. I can't use a stick for the pain in my feet as I have issues with my hands too, but if I could use a stick I would I think, as it would make my pain less invisible. Most of the time I don't want it to be invisible. Having just had operations on my wrists, and had to wear big bandages, then smaller ones, and I still have obvious wounds on my hands, people are very caring, offering help, holding doors open etc. I do appreciate people making allowances for me, and on the whole it has been offered rather than forced on me.

[rowantree]

I would like people to know I am in chronic pain without having to tell them over and over. I would like people to understand that -yes I am still in pain, just as I was yesterday, last week, last month ... Not sure what that would achieve but it is what I would like. I don't mean random people on the street, but colleagues at work, friends, family. And to have a 'secret sign' that others in the same way could see and choose to comment on and connect with me. Maybe. But on the other hand there are hypermobility syndrome wristbands and I'm not sure if I want to wear one. I think because it makes me feel like I'm making a point of my condition, but then that is my point! As you can see I'm confused by my own views on the idea! Thanks everyone for your opinions. It's very interesting to hear other's views and experiences.

[nedd]

A badge maybe. It would have to be something funny.

I have been wracking my brain and so far have failed to come up with anything.

I wonder why?

[Hidden]

Hello BOB here

In the 50s people used to have a white walking stick to show they were disabled. Generally now I like to keep then guessing, Mine has a brass duck head for a handle

All the best

BOB