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Living with chronic pain - the hidden disability

Ali Maclaine

In 1992 I was a passenger in a car that was involved in a "Dukes of Hazzard"-style crash and I broke two vertebrae. I was 26 years old. Despite three major spinal operations since then, I live with pain every moment of the day. I can sit, stand and walk for only about 15 minutes at a time.
Medically speaking, what I experience is termed "chronic pain", which is defined as pain that has lasted for more than 3-6 months. But, to me, that term sounds like something that happens regularly but is not continuous. I think "persistent pain" is a better description. But even that term is a misnomer - very few pain patients have the same level of pain all the time. There are "good" hours/days/weeks/ months, when the pain is a little less, and "bad" hours/days/ weeks/months, when it is worse.
It is natural that when you experience pain you look for a cure. You expect that medicine and the medical profession will be able to cure you. Therefore initially after the accident things weren't too bad - I'd broken some bones and I expected to be in some pain, but I would soon be better. However, as time went by and I was still in pain, despair started to set in.
Hope is a hard one. You need to have hope when you go into an operation, when you start a new drug or undergo a medical procedure, but the fallout when these processes don't get rid of the pain can be extremely hard to bear. It is very difficult not to blame yourself, think that you haven't tried hard enough, or even that you are being punished for something. There is also a tendency to blame the medical profession, and I have to say that in my experience I think that some of that blame is justified.

Coping with chronic pain
People cope with chronic pain in very different ways. Over the years I have met a lot of people with chronic pain like me - my "pain friends"! I have "pain friends" who drink too much, others who talk about their pain all the time, and still others who, like me, try not to talk about it at all. Whenever I feel I can't cope with the pain, I "cocoon" myself away from the world and go somewhere quiet for time out.
People with chronic pain often find that one medical problem quickly leads to another. It sometimes feels like my body is falling apart. My back is fused from T3 to L3 - so after a while my shoulders started to go as the joints were being overused. My walking changed because of the pain in my back and I started getting hip problems. I have stomach problems because of the damage from the analgesia. I also seem to be prone to every bug that is around. This is frustrating and means that my GP notes are huge. Knowing that I myself am "a pain", always seeking medical help, is bad enough, but being made to feel that I'm a nuisance by medical staff doesn't help.

How to deal with someone who has chronic pain
Lets face it, I don't look disabled most of the time - when I am out of the house I make a real effort not to limp, clutch my back, lie down or wince. This is for two reasons - first, I want to be seen as "Ali", not "Ali with the bad back", and second, because I want to avoid hassle from people giving me advice on how to get better. But when you see behind the façade my life is not great. Things that people take for granted are difficult for me - for example, I can't sit through a whole film in the cinema; if I go out for a meal I have to stand up for long periods at a time; I can't drive for more than 15 minutes. Trying to hide how I feel means that I can't laugh things off in the same way as other people can. For example, I had my teeth straightened, only to be told by a physiotherapist that they were still a bit "goofy" - hilarious perhaps to someone else, but for me, with my self-esteem at a very low ebb, devastating.

Talking to someone outside the family
Emotionally it has been very hard over the years. I am lucky to have a very good network of family and friends, but I still found that that wasn't enough. I didn't want to tell them how bad I was feeling, because I couldn't cope with their feelings as well as my own. At my insistence my GP prescribed antidepressants, and via my sister I found a counsellor who ­basically just listened. It really helped to talk to someone who didn't have an agenda.

Emotions
The feelings of isolation associated with chronic pain are huge. At the time of the accident I was living in the fast lane, and while I came crashing off, all my contemporaries carried on. I was very jealous, and the desire to hide away from everyone was, at times, overwhelming. Also, when you have chronic pain nothing really changes. You still have pain, you haven't done anything, and there is nothing anyone can say to make you feel better, so why bother to phone people and be reminded of the fun that they are having? After a while you don't bother and so, in effect, you isolate yourself more - it becomes a vicious circle. Transport difficulties compound the problems of isolation.

Relationships
Chronic pain puts huge strains on relationships. In my case I had to go and live with my parents again because I couldn't cope alone, and I ended up living there for 10 years. Instead of being a capable adult I became a child again, with my parents looking after me. I was lucky, my parents were able to help me and were my friends, and in the end we came through, closer than ever. Others of my "pain friends" were not so lucky - either they didn't get on with their parents, or their parents were elderly and so were not physically or emotionally capable of looking after a disabled child/adult.
For the partner of the person with chronic pain it is difficult because the person that they fell in love with isn't the same anymore, and they often end up being a carer rather than a lover. For the person with chronic pain it can get terribly frustrating - "They know that I can't reach that/that is too heavy for me/that I need quiet to rest/etc, they are just so thoughtless." Often the most frustrating things are the things that your "old self" would do without thinking or could do quickly. To suddenly rely on others with their own priorities and ways of doing things can make a person mad. My own relationship broke up, and this story is very common.

Paperwork - litigation and the DSS
There are huge stresses surrounding having chronic pain, on top of the pain itself. Often there is litigation surrounding the cause of the pain (it took 10 years to settle my case). The paperwork for any litigation is immense, and dealing with it is not only physically tiring, increasing the pain, but also means that you are constantly being questioned about whether you are "putting it on". To my knowledge I was followed, and other "pain friends" have been too. It is vital to have a solicitor that understands chronic pain.
Money is another worry. Financially I was lucky as I was living with my parents, but others struggle on benefits. The DSS process seems designed to make things difficult. It is a system whereby you are trying to get better, but you know that if you do improve your money can be taken away and that then if you relapse (common with chronic pain) it is very hard to get back on benefits. The forms are complicated, and people often do not get the benefits they are entitled to. You are also worried that every time you see a medical person they will not understand chronic pain and will assess you as better than you are, which in turn can lead to your benefits being stopped.
Litigation and coping with the dreaded DSS are a constant hassle. You already think that you're pathetic and other people in the same situation would cope better, and the system seems designed to confirm this to you. On the one hand you want to try new things, such as a job, but you know that it is very difficult to find a job that is: flexible enough so that if you have a flare-up you can have indefinite periods of time off; that will allow you to sit or stand for no more than 15 minutes at a time; and that is near home so that you don't have transport problems. Moreover, even if you could find a job with all of these things, will you be in so much pain that you collapse in bed in agony as soon as you are home and end up incapacitated all weekend?

Help for people with chronic pain
In my opinion, people need professional help to deal with their chronic pain and all it entails. As each person has their own particular symptoms and experiences, an expertly managed approach to the individual is required.

Pain management programmes
Pain management programmes (PMPs) do work, but in my opinion only if you have come to believe that there may be an operation/doctor/drug out there to stop the pain, but for now you are willing to learn to live with it. It will not work if you believe that this programme is a waste of time, and all you need is an operation/doctor/drug to be pain free and get your life back. The PMP I was on was led by Dr Charles Pither (now at the RealHealth Institute) and it literally helped me to live again. There were lots of elements to it: physical exercise and relaxation; knowledge about pain (such as why some people get chronic pain); cognitive behavioural therapy, and so on. Also, being around other people with chronic pain, sharing tips, having a laugh and making friends was really important.

Attitude
Encourage people to try and have a "what the hell" attitude. I lie down everywhere - I have been known to lie in the cinema, in restaurants, at weddings, even during evening classes. I have had people staring, saying rude things, but I still do it. Why? Because it's the only way I can do things. It's not easy and it's embarrassing, but it's a good thing to encourage sufferers of pain to do it - it reduces isolation.
After 12 years of pain in many ways I am very used to it. It does limit my life and my options and it frustrates me more than I can explain, but I have a life despite the pain. It's not the life I would have had, but it is a life and I have learnt to live with the pain - although I'd still like it to go away!

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Resources
British Pain Society
T:020 7631 8871
W:www.britishpainsociety.org Has lots of ­information, including on pain management programmes
Pain Concern
T:01620 822572
W:www.painconcern.org.uk
RealHealth Institute
T:020 8846 3710
W:www.realhealth.org.uk
RCN Pain Forum
Contact the RCN for details
W:www.rcn.org.uk
Pain Relief Foundation
T:0151 529 5820
W:www.painrelieffoundation.org.uk
Involved with the education of doctors and nurses in pain management