The dark side of the hill
Understanding stress in general
The particular stress of chronic arthritis
Some negative emotional reactions
Ways of understanding why arthritis may cause these negative reactions
What does it all add up to?
Medical books on rheumatic disorders like RA, AS, etc, tend to say very little about their psychological and emotional impact, and yet for me and, I know, for many other people, this is sometimes as hard to cope with as the physical symptoms.
"Generally speaking, I think I needed help to adjust to my illness emotionally and psychologically, more than just practical treatment. I hope you will be able to cover this aspect in your book and, perhaps, convince new sufferers, that it needn't be the end of the world." (Marilyn S, who has psoriatic arthritis)
"I suffered bouts of intense depression and how my poor husband put up with me at the time I don't know… I battled on accepting the physical pain but still not mentally adjusting to my insidious limitations. I would get so annoyed and frustrated at not being able to do things such as washing and dressing and being an independent person by nature — even stubborn! — this made things doubly difficult — result more bouts of depression and so the vicious circle continued and my joints deteriorated." (Carol J, who has RA)
Grace Stuart developed RA when she was 19 and in her 50s wrote about her experiences (Private World of Pain, Allen and Unwin, 1953, now out of print, alas):
"one can be stupid with pain, stupid, so that thinking grows inept and feeling harsh and out of tune… those of us who are badly hurt can hate, we can be jealous and bitter and destructive; hurting that which is free from pain, because on somebody we must revenge our own…"
"With every year that I live I become more profoundly convinced that the situation should be met both psychologically and physically. I put the psychological aspect first, for I believe that upon the health of the ego, the self; may depend much of the virtue of the physical treatment… I believe the training of the self to a now 'different' kind of life, is not at all to be done hastily but with as long and as great a skill as that demanded by the physical machine."
The next two diary extracts might sound as if they were written by two different people, but they're both by Mary*, who has RA. First, a very bad day:
"Sometimes, just occasionally. I get bloody sick of the whole business of arthritis. I get sick of smiling and gritting my teeth and making jokes. I want to cry my eyes out or, alternatively, kick someone's teeth in. I'm sick of the pain — pain in my hands as I write; pain in my knees, my feet, my shoulders. I want to stand up straight with no bent, aching knees. I want to climb up the stairs the normal way instead of one step at a time. I want to go to bed when I feel tired instead of delaying the process for half an hour because I can't face the pain involved in getting upstairs. I want to go upstairs to bed without biting my lips all the way to stop the grunts of pain from slipping out. I'm sick of pain. I'm sick of being silent and playing it down and pretending it doesn't matter. It does. It's a bloody awful, painful pain and it's there day in, day out… I want to talk about it; to tell someone of it but who'd want to listen? I want to cry and be comforted like a child. Pain is such a lonely business."
Hard to believe that Mary* is also a pretty active, optimistic person, who runs a household of two energetic sons and a husband, organises swimming sessions and does voluntary work. Here she is again, this time reminding us that there are good times too:
"Today I feel absolutely great, bursting with health and dying to tell the world. Even my knee is slightly improved and the rainy weather doesn't seem to have had its usual effect on me. There's no describing the relief and joy when it does let up for a while. Just 24 hours gives you a breather, a chance to pick yourself up off the floor and prepare to do battle again. There's just no words to describe it. You suddenly become aware of the absence of pain as the mother of a young child can suddenly become aware of the absence of noise. It ought to be a negative thing but it isn't because, where once there was pain, there is now not emptiness but triumph, exhilaration. You've got it on the run even if it is only for a few hours. Of course it doesn't go completely. There is still pain but just a gentle, achey background sort of pain, one you can virtually ignore."
Some 14 years and two knee joints later, Mary* was astonished to re-read her 'bad day' diary extract (see her more recent comments in chapter 11).
Back to the early reactions. Most of us blissfully take our good health for granted until one day it's not there. It's a particular shock when you're young or youngish and suddenly find you're imprisoned in a body which not only refuses to do just what you want when you want, but also inexplicably and unpredictably produces alarming aches and pains, which no one else seems able to understand; worse still, may even disbelieve.
Coping emotionally when you're young is, I think, especially difficult. You're at an age when life is making peak demands on you and your friends. Finding a job, getting married, having a family, finding somewhere to live, getting enough money, etc — there's quite enough to sort out as it is. But usually your friends are working their way through similar situations too, which helps. That's not usually the case with something like RA or AS, and that in itself can be frightening and isolating.
However, you're not alone. Many of us out here also know the disconcerting ups and downs of 'living with arthritis'. Most important, though, we can tell you there is light at the end of the tunnel; spring does follow winter. Somehow, 'good' or 'better' days do come, hard though it may sometimes be to believe that in the gloomiest depths. It does become possible to count blessings and to stop the arthritis dominating life completely. You'll discover plenty of ways of coping and adapting and outwitting the arthritis. People like us do manage to hold down a job, raise a family, find a purpose in living, enhance other people's lives, do 'do our bit' for society, and do find happiness in life.
By the way, if your inflammatory arthritis is quite mild, please don't alarm yourself by thinking gloom is necessarily in store for you. It ain't necessarily so — you could well remain only mildly affected, like one young person with arthritis (YPA) in his 20s:
"I have had RA since I was 14… The only problem I have is that I cannot run very fast and am weaker than most people. I have hardly any real pain and my illness is quite stable… I can't forget arthritis, but I can ignore it."
or like another YPA, writing to In Contact:
"I have mild RA and take tablets daily, and apart from being a bit careful I lead a normal life with isolated bad patches. However, I do find the limitations of the disease frustrating at times especially when basic things like hair-washing, housework, and outings with the children are affected. I'm sure others will agree… that explaining to other people why you can disco dance one evening and yet barely walk short distances another, is a very difficult task. I no longer try since I have come to terms with the situation and I have so much love and support from my husband and family, who understand and could not be more helpful."
If you too have only mild arthritis, and wonder what on earth I'm going on about at such length, do please feel free to ignore the rest of this chapter!
'Stress' has become a fashionable concern nowadays, featuring widely in the media. Chronic inflammatory arthritis (CIA for short) is a particularly nasty source of stress. Understanding stress can help you start to deal with CIA. It can help you break the vicious pain circle (worry about pain = more pain = more worry = still more pain) and help you adjust to the whole unwanted shenanigan.
It's interesting to see that the new area of psychoneuroimmunology (!) is now showing scientifically that the body's immune system does respond to how stressed we are. Disorders like RA and lupus are autoimmune disorders, where for some unknown reason the immune system malfunctions. Might stress play some part in what happens?
We all experience some sort of stress (or tension) in life. Stress is the way your body tries to adapt to deal with challenges at work, or to stop your child doing something dangerous, or, on a simpler level, to answer an unexpected doorbell ring. Stress isn't necessarily harmful, it can be stimulating too. Some people, racing drivers, politicians, daredevils, seek out stress and thrive on it. And most of us enjoy the thrilling tension of an exciting game or film.
How does the body react to stress? Faced with an outside threat, our primitive ancestors needed bodies that would let them either fight, or take flight. Even nowadays, faced with some sort of 'threat', our bodies react the same way.
The body responds by instantly preparing itself for fight or flight. Muscles tense, ready for action. Heart rate and breathing speed up, blood pressure rises, and adrenalin surges into the blood so that extra sugar is produced to feed working muscles. They need extra oxygen too so blood is diverted from other areas to bring it, thus draining smaller blood vesels leaving them 'white' (hence 'white with fear'). Other body systems, like the digestive system, slow down or stop. Skin sweats, to cool overheating muscles.
These reactions are fine if vigorous physical activity is needed to fight or escape from a stress situation, but they aren't appropriate for so many of the situations we twenty-first century humans find ourselves in, like coping with a difficult child, an unreasonable boss, with time pressures, overcrowded trains, moving house, unemployment. And they're definitely inappropriate for coping with chronic inflammatory arthritis. In an inappropriate situation the body's fight or flight reaction can actually make coping more difficult.
Continued chronic stress, if unrelieved, can lead to health problems. Continued high blood pressure, continued strain on the digestive system, continued muscle tension, etc, can all cause physical problems well worth avoiding if possible. Some of the psychological effects were described by psychologist Jane Firbanks in Practical Health Aug/Sept 1987:
"It's the result of destructive pressures involving constant, unresolved frustration and conflict. It is about a growing, pervasive sense of helplessness and failure whch saps your will and energy, which can send you going round in circles… A major component in distress is helplessness, not feeling in control of your own life. Thus stress symptoms are common among the unemployed and among mothers of small children."
Does any of this ring true with you? It's hardly surprising that someone coping with the strains of chronic arthritis might feel this way too.
Chronic arthritis can set up a vicious circle of pain and stress. It's a circle that can be broken, but if unbroken reads something like this: arthritis = pain = stress = more pain = perhaps more stress in other areas (eg social, financial, work) = worse arthritis.
Stiffness and pain and the fight or flight response make muscles become tight and tense, worsening joint movement and increasing frustration and anxiety and fatigue. In return your pain tolerance level is lowered and pain increases. Pain increases stress and stress increases pain. Prolonged stress and muscle tension can leave the healthiest body feeling exhausted so it's not surprising if your poor 'old' arthriticky body feels as if someone's been over it with a steamroller. In the early days, or during the worse spells of living with arthritis, it's all too easy to feel overwhelmed by the helplessness and 'not feeling in control' which Jane Firbanks described.
Some sources of unwanted stress in life can be removed. Arthritis is one which can't. Not yet, anyway, though medical treatment can bring relief. What we can change is how we react to it, and to other unwanted stresses in our lives. For example, if you're helplessly stuck in a traffic jam is it better to torture your poor body with ranting and raving and raised blood pressure, or to take stock of what can and can't be done and then try making the best of it — sing songs, tell jokes, listen to the radio, read a book, or whatever?
In the words of Hans Selye, the endocrinologist who first explained stress: "It is not so much what happens to you that matters, but how you take it."
How you react to the arthritis and how you set about breaking the vicious circle of pain and stress depends on all sorts of things. On your personality of course, and on outside factors too (eg doctor, family, social, financial circumstances). There are also simple self-help anti-stress techniques you can learn, (see chapter 14), plus plenty of ways of tackling stressful emotional and practical situations.
As I said, stress has become a fashionable topic nowadays, so take note of what's said and written about it by reputably qualified, responsible people. Some of what's said won't be relevant, but keep an eye open for ideas that could be helpful. OK, so you can't deal with your stress by jogging, or running a four minute mile, but breathing exercises or relaxation techniques or swimming or self-organisation techniques or 'talking therapy' can help. So too can tackling practical and relationship problems, taking up an absorbing hobby or occupation, and trying to 'think positive'. I hope the ideas in chapters 13 and 14, and the rest of the book will help too. Even if the arthritis doesn't seem to benefit directly, cultivating a healthier, less stressed body will at least help you cope better.
Keep in mind as a guideline the 'Serenity Prayer':
Grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.
WARNING: Please don't be depressed by the list of 'downs' that follows. We need to understand them first, before we can get to work on increasing the 'ups' in life.
I don't want to spend too much time dwelling on disheartening aspects of chronic arthritis, but I do think it helps to understand something of what can happen, and to know that you're not alone. Self-knowledge is an important item in your Outwit Arthritis Kit. Before we can 'think positive' I do think we need to understand 'the negative'. Heather Unsworth (In Coping with Rheumatoid Arthritis, Chambers) quotes a young housewife with RA:
"Most people can cope with a situation if given the facts, but my biggest problem initially was feeling guilty and thinking that as a mother and wife I had let the family down. This depression and frustration was very difficult to handle as I had led a very active life… 25 years later, I would advise any new sufferer that a positive attitude is most important — and the ability to live one day at a time will get you through."
Chapters 13 and 14 will get you started on maximising the ups and minimising any of these downs in your life, and help you start to take control of your life again. Some of the strains of coping with chronic arthritis come in our relationships with other people, and I hope chapter 25, and others, will be of special help there.
Fear is common. Fear of the unknown. Fear of the future. Fear of the illness's effect on you, on your life, on your family, on your finances, on your work, on your social life, etc. With fear there's also anxiety.
Start to cope with the fear and anxiety by listing all the things you're afraid of. Then by yourself, or with someone else's help, plan what you could do about them. Maybe you're afraid of ending up 'wheelchair-bound'? (horrible, outdated word, now replaced by 'wheelchair user') Resolve to ask your doctor what the chances are; explain your fears. Find out the statistical likelihood of this happening. In fact the chances are much higher that you won't end up as a full-time wheelchair user. So is it really worth wasting your limited time and energy worrying about something that may never happen? Concentrate on reality rather than fiction.
Even if using a wheelchair does become necessary, that isn't the end of the world: many of us have been delighted to find that choosing to use a wheelchair, even now and then, can help us do what we couldn't otherwise manage, and save precious energy for other activities. Using the term 'wheelchair user', reminds us that we are in control, like this person:
"To most people going into a wheelchair is the last straw and the passport for giving up. To me it was the opposite, after struggling with Zimmers and sticks, etc, each step feelng you had walked miles. To be able to sit in a wheelchair and go about your jobs is heaven." (A YPA writing in ARC magazine, 1987)
You might find helpful MIND's leaflet Understanding Anxiety even though it's not specifically for people with arthritis or chronic illness. It's downloadable from MIND's website, or for more information email publications@mind.org.uk or phone 0844 448 4448 or Mindinfoline 0845 766 0163. In Private World of Pain Grace Stuart described how she dealt with another common fear by learning the skills of 'pacing' herself:
"…fear that if one does not go on and on one will do, not less, but nothing at all, just be stuck. It takes perhaps more effort to conserve effort than to overspend it, but it is certainly worth the effort, to have less pain and, generally speaking, to live more pleasantly."
You may experience anger, too. Perhaps anger that there's no instant cure? Anger at your doctor? Anger at people who don't understand. Anger at a world that seems wilfully and constantly to thrust obstacles in your way. Anger at your uncooperative joints. Anger that you take out on your nearest and dearest. Anger at being left to fend for yourself too much or anger at being mollycoddled. Anger at 'just everything' — that you vent on the nearest scapegoat in a desperate attempt to blame someone or something for what's happened.
Anger's a natural reaction, but it has to be handled carefully. In his book Coping with Lupus, psychologist Robert Phillips compares anger to a stick of dynamite:
"Anger is a form of energy, and the more physical energy that builds up in the body because of anger, the more necessary it is for you to release that energy. The energy cannot be destroyed, so if it is not released in some constructive manner, it will eventually come out in some other, less desirable way. Imagine the energy from anger as a stick of dynamite, all ready to explode. If you can get rid of it, it will explode away from you. It may cause some damage, but damage that will not hurt you internally as much as if you swallowed the dynamite to keep others from being hurt. Obviously, the ideal solution is not to throw that stick of dynamite, and not to swallow it, but… to try and de-fuse the dynamite!" (Avery Publishing, Garden City Park, New York, USA)
Anger, expressed or unexpressed, can be a real pain in personal relationships, and needs handling extra-carefully. More about that in chapter 26.
Start to cope with the anger by turning it to positive uses — eg by doing things to change society's ignorance and attitudes (eg by joining a group, or writing letters to newspapers, calling a radio phone-in). Instead of shouting your anger at someone, try the thought-stopping technique: picture a big red 'stop' sign and do something to divert your anger, eg count to five; imagine yourself in the other person's shoes; if you then still need to express anger, do it calmly and clearly, 'talk not bite'. Try too reducing a heated argument by:
"complimenting a person or looking for positive signs in what the person is saying to you, even if you're angry. This works in two ways. One, it will probably surprise the person, and two, you will be focusing on words or thoughts which are more constructive, rather than letting yourself get angry because of what's being said to you. Calmly restate your feelings." (Dr Phillips again)
Avoid blaming someone else if the real culprit is the arthritis. Some people find it helpful to personify the arthritis, as a villain named Arthur Itis. They then have a named scapegoat they can blame, and complain about, instead of blaming themselves or someone else.
Try to find harmless outlets for anger, or express it in a controlled way. Play an exciting, tense, stimulating game, read a gripping book, watch an exciting film or TV programme, to help release pent-up emotion and anger. Playwrights and the ancient Greeks called this technique 'catharsis'. Rather than expressing anger aggressively and destructively, learn to be assertive, instead. Look for instance at MIND's leaflet How to assert yourself, downloadable from MIND's website, or email publications@mind.org.uk or phone 0844 448 4448 or Mindinfoline 0845 766 0163. Or try books like Gael Lindenfield's Assert Yourself (Thorsons, 1986) and Anne Dickson's A Woman in Your Own Right (Quartet, 1982). Arthritis Care's self-management programmes include assertiveness and confidence training.
Maybe guilt is something you feel? Guilt that the housework's not getting done. Guilt that your family's suffering. Guilt that you can't keep up high standards at work. Guilt at taking out your misery or anger on your nearest and dearest. Guilt at complaining at all when 'there's others worse off than you'. Feeling somehow responsible for what's happened, and for what the arthritis makes you unable to do. Some people even have a strange guilt feeling that they've caused the RA or whatever themselves — but that's impossible — it's certainly not something self-inflictable like smoking-induced illness, for instance.
Start to eliminate the guilt by accepting that the arthritis is in no way your fault. So stop feeling guilty. Instead concentrate on what you can do. Accept what your body won't let you do. Stop worrying about the can't dos. Either forget them completely, or use your brain (and other people's) to find alternatives. Eliminate 'should' thoughts ('I should have been able to do the housework today'). Give yourself more realistic goals instead.
Exhaustion, fatigue Sheer inability to keep going. That devilish old crony of Arthur Itis nicknamed 'General Malaise'. Exhaustion from battling with pain and frustrations galore. Feeling physically and emotionally shattered. Fatigue which may lead to other problems, eg at work, or with lively youngsters, or with your sex life.
Start to cope with the fatigue by learning your limitations and planning a rest and exercise routine to suit your body; by pacing yourself, 'budgeting' your energy and eliminating all non-essential demands on it; by asking for help with what can't be eliminated; by using all possible labour-saving gadgets and techniques. Keep your limited energy rations for what gives you a boost and makes you feel good.
Frustration Frustration at the constant conflict between mind and body, between what you want to do and what your uncooperative body wants to do or refuses to do. Someone said it felt as if she was constantly trying to struggle through thick mud. Maybe non-arthritic people get an inkling of our frustrations when they try something like learning to ski or skate — but it's only a tiny inkling, because the big difference is that they're doing what they want to do, choosing to struggle, not fighting against pain to do so. And their frustration doesn't go on and on.
Frustration at a world suddenly full of obstacles so that tiny molehills become mountains. Simply making a cup of tea can involve so many struggles that we give up altogether, or spend so much time and effort on it there's none left for anything else. The tiniest achievements may become a luxury. No wonder we get tetchy when a non-arthritic person unthinkingly puts away the saucepan of water we've just spent hours getting out and filling! Frustration that no one seems to understand, or care. Frustration at losing independence. Frustration at not being in control. Frustration at losing the joy of being able to be spontaneous.
Start to cope with the frustration by learning how to be independent where possible. Get over the 'invisibility barrier' by communicating, explaining; by identifying escape valves for pent-up frustrations; by giving yourself a sense of purpose and vowing to control what can be controlled in your life. Planning ahead is a good way of cutting down on some frustrations. Try not to dwell on the can't dos but remind yourself of all your can dos and work at increasing them.
Bewilderment The search for a reason why? Why has it happened? What have you done to deserve it? Hard to accept that we don't know why, and that we most definitely have not done anything to deserve it. Bewilderment at uncertainty and insecurity, not knowing how we'll be tomorrow, or next week, let alone next year, or even later the same day. Bewilderment at simply not knowing what to do for the best. Why won't my pathetic body do what I want? Why can't I just do things like I used to — bop happily for hours at a party, go off for a walk with the kids, window-shop for hours, just get on a bus for a ride? Bewilderment at what Grace Stuart, talking about RA, calls:
"the strange powerlessness… of the arthritic joint, so well known to the arthritic and so little known to anyone else… Beyond a certain point in this disease there is no question of endurance. You may endure all the pain you can or will, but if your wrist, lifting the teapot, gives way, you spill the tea or drop the pot. There is no argument! Only acquiescence! Useless to lift teapots!" (In Private World of Pain)
Depression Not surprisingly, a build-up of fear and frustration, of unrelieved stress, and setback after setback may leave you feeling depressed, especially in the early days, before your Outwit Arthritis Kit begins to work. Physical and emotional 'bruising' may turn the liveliest extrovert into an introvert:
"You may feel that everything is hopeless, that life as you know it may never be the same again. Is it even worth carrying on? Is your life going to be so miserable that you cannot face it? You may be in a trough of despair and just don't know how to start climbing out. Of course, your family, friends, and doctors will all be helping you as much as they can and when you begin to get some relief of pain due to treatment this will make you feel better." (YPA Sue G, writing in In Contact)
Maybe it helps to remember that a million and one 'life-events' can bring on depression in anyone, not just you. Chronic inflammatory arthritis just happens to be a particularly beastly life-event, beastly in itself, and beastly in the way it magnifies other setbacks. It's hardly suprising if you feel depressed instead of gleefully shouting yippee.
Starting to cope Sometimes you can weather the storm yourself, sometimes you need help (the right sort) from others. At one extreme a depression may be so intense that you need medical help to get out of it. Don't hesitate to see your doctor for help if you feel imprisoned in a black depression that just seems to go on and on. Talk to the Samaritans, too (tel: 08457 90 90 90, 24 hours a day, or email jo@samaritans.org). Remember they're there not just to help people on the verge of suicide, but always ready to help anyone feeling particularly miserable. The counsellors on the helpline (0808 800 4050) at Arthritis Care and other support group helplines are there, too, to lend an understanding and friendly ear.
Good family relationships and a close reliable friend or two are worth their weight in gold. Some people understandably may find it difficult to know how to react, either trying too hard to be reassuring or giving you the 'pull yourself together' routine. Try showing them bits of this book, to help them understand. Try too to explain that simply 'just being there' may often be their best approach, as psychiatrist Robin Skynner and comedian/writer John Cleese explain:
JC: Sometimes just being with someone we like and trust helps us in a way that's slightly different from either rest or reassurance.
RS: I think that's right. It's easy to remember to do the shopping for people under stress, to take around some food, or share experience, but sometimes we forget that just sticking around, just 'being there' also helps enormously. Even though it doesn't feel as though we're doing much…
JC: …I don't think it had ever occurred to me that you could quite simply sit with someone and say, Yes this is very difficult for you and you have some unpleasant feelings to cope with. So I'll just sit here and be with you while that's going on. (Families and How To Survive Them, Methuen, London)
As time goes by you'll build up a repertoire of ways of either avoiding black and gloomy times or ways of at least living through them, knowing there'll be light at the end of the tunnel. Sue Stephenson (with JIA) learnt the value of talking to someone after problems when she started a secretarial course:
"By this time my arthritis was pretty bad, so having to walk around the college and climb all the stairs eventually put a strain on myself and my work. Being an idiot, I didn't try to talk to anyone about it, so as my work suffered and my health, I got more and more depressed. I let it go on for a long time. That was my first big mistake… Now I know to try to talk to someone, get it off your chest. When I did talk to my college tutor about the problem, she immediately saw to it that I had my hours spent at college reduced by half: the other half I was able to work at home. My work improved in no time at all. I still did the same amount of work, but by working partly at home, I didn't get half as tired as I did before. If only I'd talked to someone earlier I would have saved all that misery…" (In Contact)
Again, later, Sue lost hope, and for two years just watched TV and read books all day. Eventually she realised she just couldn't go on like that. Step by step she started to get out and about and to get over embarrassment at her arthritis. She began to enjoy herself and meet people, and eventually her future husband:
"…people are more than willing to help if you ask, but initially it is down to you to do something about it. Don't think you won't ever get out of your depression, or you can't have a normal life. You will, and you can! I thought like that too, but look at me now… Fight it, there is a life after depression you know! Only don't leave it too long, like I did. With fight in you, and the help of other people, who says you can't do it?"
Look at the section on 'talking therapy' in chapter 14. You might find helpful some general publications: MIND's booklets such as Understanding Depression or Understanding talking treatments, downloadable from MIND's website, or email publications@mind.org.uk or phone 0844 448 4448 or Mindinfoline 0845 766 0163. Or look at the British Holistic Medical Association's paperback Overcoming Depression (Dorling Kindersley, 1987), by Dr Richard Gillett, British psychiatrist and psychotherapist.
The uncertainty and unpredictability of something like RA takes some adjusting to — what someone described as being 'up and down like a perishing yo-yo'. Not knowing what's going to happen. Not knowing what to do for the best at any one time. Wondering which body part is going to let you down next. Sociologist Carolyn L Wiener (University of California) analysed the socio-psychological aspects in an article, The Burden of Rheumatoid Arthritis: Tolerating the Uncertainty (Soc Sci & Med, Vol 9, Pergamon Press 1975). Sorry about the jargon but it's a fair insight nevertheless:
"The variability of progression, severity and areas of involvement cannot be stressed enough. For example, an arthritic may have reduced mobility but no impairment of skill, reduced energy but no interference with mobility, reduced energy one day and renewed energy the next and so on. Loss of skill will remain fairly constant if it is caused by deformity, but it is variable if caused by swelling; the other resources, mobility and energy, can fluctuate. There is uncertainty about:
- whether there will be any pain, swelling or stiffness;
- the area of involvement;
- the intensity of the disability;
- whether the onset will be gradual or sudden;
- how long it will last;
- how frequently flare-ups will occur…"
The person with RA lives in a state of 'variable uncertainty', she says, where on the one hand pain and disability and on the other the need to keep going are in constant competition with each other, 'like two runners in a nightmare race'.
"In tolerating the uncertainty, the arthritic is engaged in a precarious balancing of options — options somewhat limited because of already reduced resources of mobility, skill, strength and energy. Indeed, a balancing is involved in all of the pacing decisions (weighing the potential benefit of acupuncture against the climb up two flights of stairs 'that will just about kill me', the potential withdrawal from church activity against the loss of social interaction). The options are constantly presenting themselves, each to be met with an ad hoc response: whether to cover-up and risk inability to justify inaction when needed; whether to keep-up and suffer the increased pain and fatigue; whether to elicit help and risk loss of normalizing, whether to re-normalize and decrease the need for covering-up and keeping-up. Furthermore… there exists a constant balancing of the hope of relief and/or remission against the dread of progression."
By 'normalization' she means social strategies used to keep up a 'normal' life, eg covering-up and keeping-up, and by 're-normalization' she means adjusting to reduced activities. Pacing is a practical strategy — identifying which activities you're able to do, how often, and under what circumstances, and budgeting your limited energy accordingly. Hope is a psychological strategy we use to keep going. Though all humans live in a state of some uncertainty, we YPAs experience it in an exaggerated form and with limited options.
Start to cope Use the information here and elsewhere to help you make the most of limited options. Accept physical limitations which are realistic but don't add others by giving-up or over-doing. Resolve to extend what you can do in every way possible that doesn't harm your fragile joints. Keep going mentally, but with the brakes on physically!
In some ways it's like learning to live on a limited budget. Overspending's dangerous; it's more intelligent to learn how best to live within your budget. The learning process takes time and effort, and unfortunately the size of the budget may suddenly change, but coping's still possible, even so.
Self-pity, self-hate, apathy, lethargy, bitterness, resentment, envy, jealousy — are some of the other unhelpful negative reactions which may dog our paths, but I think we've already looked at enough, and need to start looking towards the positive!
One way of understanding is to see what's happened as a sort of bereavement. Losing your good health is a shock to the system, like losing someone close to you through death. It's all the more of a shock when it's so unexpected. But like a bereavement, with time and support, information and motivation, you can come to terms with what can't be changed, and can change what can be.
The best description of this 'bereavement effect' I've come across is by psychiatrist Alexander (Sandy) Burnfield. He's lived with a chronic illness, too, for very many years, since his days as a medical student. His condition, multiple sclerosis (MS), is medically very different from RA and its cousins. But they're all 'chronic disorders', all as yet without a cure and unpredictable, and emotional reactions can be similar:
"…instead of having lost a loved one through death, we have lost our good health through illness. We have in fact lost a part of ourselves which we loved very much and we must instead take on a different identity as 'a person who has MS', or as 'a disabled person'. It is necessary to mourn our loss if we are to make a good adjustment in the end, and this process cannot be avoided or rushed.
"When we lose a loved one through death, it may take months or even years before we can accept our loss. This is also true for MS, but not quite so straightforward and clear cut. We lose our good health gradually and slowly and we can never be sure how final the loss will be. We might be restored to health completely, sometimes partially but perhaps not at all, and this insecurity is hard to bear. We may hardly have become used to one new self-image when we must abandon it and take on a different one.
"…It is not surprising that we must go through a period of sadness and grief. This is usually mixed with feelings of anger, and we may deny both to ourselves and others that we have the disease at all. Like the bereaved, a person who has MS must come to terms with his or her condition and learn to value himself or herself again and to enjoy living. This will take time, perhaps several years, but much less time for some people than for others.
"It seems that we have to experience shock, anger and sadness over and over again before we can become inwardly strong enough to be open and realistic about our limitations. When this stage is reached we shall have begun to come to terms with MS. Some people will be able to start leading a life just as fulfilling as before, a life that may be given more meaning by the experience of illness and suffering… We can emerge from fear and depression when we have first accepted these feelings and been able to express them to ourselves and others.
"Relatives also experience similar feelings of grief when someone in the family develops MS. Coupled with their grief, they may have complicated feelings of guilt, and frustration, as well as a desire to be strong and supportive. When the whole family is faced with these complex feelings, they may not be able to support each other. They may require help from someone outside the family for a while, perhaps for a long time.
"The emotional strain… can cause even more suffering than the physical effects of the disease. This is true both for the person who has MS and for those close to him or her. The psychological process of adjusting to new identities, new roles and a new lifestyle is often long and complicated. For many, however, there will be unexpected rewards and fulfilment. Life sometimes appears as a random and purposeless experience from which we are asked to create meaning. For those of us with MS, and for our relatives, this is our particular challenge." (In Multiple Sclerosis: A Personal Exploration, Souvenir)
On the internet there's a more recent description (2002) of Sandy's views on living with his MS.
Sandy Burnfield reminds us of something it's easy to forget. That those close to us may 'suffer' too and may also need to adjust psychologically. They too may feel hopeless, helpless, wanting to help yet not knowing how to. They too may feel angry, frustrated, fearful, and miserable. Some may seek a way out of their dilemma by turning away. Others realise that both of you need time and perseverance and help to work through problems.
Relationships with outsiders may be affected, too, in the same way as bereaved or divorced people may find other people act oddly towards them. Usually it's because the latter don't know how to handle the situation, but this can often be overcome (see chapter 25).
Another way of understanding our emotional reactions is described by John Cleese and Robin Skynner. Like babies and children, in the early days someone faced with a stressful 'life change' may need 'looking after', 'mothering', like a baby or a child:
John Cleese: "…to summarize, to handle change we need: one, to be shielded from usual demands so we can rest; two, information to reassure anxieties and help us to cope; and three, emotional support." (Families and How to Survive Them, Methuen, London)
But just like children, as we learn the skills of coping, so we can 'grow up' and learn to stand, psychologically speaking, at least, on our own two feet again. Our nearest and dearest have to learn to let go too, to 'let us grow up' just as parents with their children. Though some support is welcome, over-protection stops us learning how to cope. Even if some physical dependence remains we can still become psychologically independent.
A particular bugbear of something like RA is that it's not usually a static condition, and so the 'readjusting' and 'learning to cope' process may have to happen more than once, as Sue G (with RA) described:
"There is a marked difference between this and something like an amputation or spinal injury. Once that has happened you have to work through the stages to accepting it but once you're there, that's it. You are not likely to change. With arthritis you just get to accept your present situation when it changes again. Perhaps another joint becomes involved and you have to go through the stages again and again.
"I see my life as a steeplechase. I can be running (!) along quite happily and steadily when suddenly I hit an obstacle. I then have to go through the various stages in order to climb up and over that obstacle. Depending on the obstacle's size it varies how quickly I can overcome it. When I've gone through all that then I can get back on an even footing…
"What I am trying to say is that 'acceptance' is an ongoing thing with arthritis. At each setback you may have to go through the stages [again] to accept your new situation. It is a little like grieving for each loss of ability or each new joint affected. If your Grandmother dies, that grief process does not suffice to keep you going if your Mother dies. You have to start again." (In Contact)
True, though you don't always need to go right back to square one. Every bit of wisdom and information you gather to deal with one setback gives you that much better a start in adjusting to the next, if it comes.
Learning to cope with a chronic inflammatory arthritis is difficult. It's not surprising we (and our nearest and dearest) may go through some bad emotional times, especially in the early days, maybe longer. Just take it a day at a time. Please don't feel so overwhelmed that you forget to be hopeful and to keep yourself looking forward. Work your way slowly towards the light at the end of the tunnel, keeping firmly in your mind the reassurance that despite everything we do work out ways of coping and of enjoying life. Try to avoid drowning in self-pity and vow instead to make the best of the life you've got. Look back at the serenity prayer and ponder these thoughts:
Some important things to keep in mind
Like many younger people with arthritis, I've been to hell and back more than once; the crucial thing to remember is the 'and back'. Things do get better again, things do change. Perspectives change. You change. Your attitudes and abilities change. And Dame Fortune waves a magic wand at the most unexpected times…