Chapter twenty-five
OTHER PEOPLE
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Chapter twenty-fiveOTHER PEOPLE |
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Arthritis and relationships
How does the arthritis create misunderstandings between us and other people?
1. The invisibility problem
2. The visibility problem
3. The youth problem
4. The problem of how to explain its oddities
5. The folklore problem
6. The fatigue problem
7. Other people's handicaps
8. The problem of needing help — sometimes, but only sometimes
9. Minding about 'what other people think'
Some thoughts on dealing with these Joe Public v Arthur ltis difficulties
Close relationships — family and partners
Existing friendships and the arthritis
Meeting new people, and making friends
Happy relationships with other people
Further information
"My favourite people are those who…
— respect and love me as I am, just as I am, and not as they wish I were.
— boost my confidence and self-esteem with praise and encouragement, and who do not criticise or blame me for failures for which the arthritis is responsible, not I.
— never bid me to 'hurry up' and take my tasks from me, for often I need time rather than help.
— don't fuss, but are ready and willing to help, quietly, when I ask.
— ask for my help, for my greatest need is to feel needed.
— do me the courtesy of asking me what I need or want, rather than assume they know what's best.
— don't let me down when they agree to do something, however trivial or unimportant it may seem to them.
— make me smile and laugh and inspire my interest in the world outside myself, and whose presence reminds me that life is well worth living.
— let me know I need never feel lonely, yet understand my need at times to be alone.
— forgive me for not always remembering that other people have problems too.
— if I am snappy and miserable, unloving and feel unlovable, nevertheless give me a kiss and cuddle and say they love me.
— aren't embarrassed if there are tears, but are sympathetic and supportive, even joining in, if they want.
— don't say 'you'll just have to learn to live with it' but instead 'I'm here to give you help and support as you soldier on, and here to listen to your problems even if I can't always help solve them.'
— remember the arthritis is only a part of me, and who take an interest in the rest of me!" (adapted and expanded from DIALOGUE, spring 1987)
As if pain and stiffness and an uncooperative body weren't enough, arthritis can sometimes be a dab hand at complicating relationships with other people, be they at home, at work, at college, in the street, in shops, on holiday, even, sometimes, healthcare and disability experts. If only they'd learn to understand the arthritis, and treat us as people, not oddities, life would be so much easier, and at no cost to anyone, even the NHS.
Surprisingly, most books written for people with arthritis by medical experts scarcely touch on its impact on relationships, and few non-YPAs (younger people with arthritis) understand the possible problems. One 12 year old girl, who launched a campaign for ARC to make people aware of children with arthritis described one problem:
"One thing that hurts is when people look at me as though I am different, as though I'm odd, and treat me like that as well, when I'm not different. It's hard to explain to people what I've got wrong with me. When I say arthritis they think that I am joking — they think it's an old people's disease."
An older YPA, who works in a bank, wrote a very perceptive article in In Contact:
"It's not easy, sometimes, because I have good and bad days. I feel the pressure to be like other people — to run up a flight of stairs to get something, to reach something down from a shelf, to use a typewriter keyboard. So many little jobs, that others take for wanted, and don't seem to realise I can't do. How much of this pressure is deliberate I don't really know.
"Some days I can see that people don't know how to react, what to say, how to help. Other days I get so fed up with explaining that I can't do something and fending off the (in my view at least) idiotic comments like 'Surely you can cope with this, manage to do that, reach the other', that I feel like screaming 'It's can't not won't, you stupid fool' (or stronger words to that effect). Then I'd like to burst into tears and run out of the branch, so that I'd never have to face these people again, who seem to flaunt their abilities in my face and make fun of me for doing things which I would love to do. Worst of all are the 'helpful ones' who make comments like 'you can't blame us for your problems, don't take them out on us' when all the time I'm trying to cope as well as I can, and it's their actions which make it impossible for me to do so. "
The experts on 'arthritis and other people' are YPAs (younger people with arthritis) themselves. There are ways of changing things for the better, though it may mean a tiresome process of trial and error for all concerned. Talking to other YPAs or reading what they've have written of their experiences can help. Look at some of the books in chapter 29, and at forums on support group websites, like NRAS and Arthritis Care.
We can each do something towards putting things right, towards educating people, hard though it seems that we, not they, should have to be the ones to take the initiative, and hard, too, if we ourselves don't understand the arthritis or know what's in store for us next. The alternative is just to say 'Damn you', and turn away, in anger, bitterness, or silent misery. We each have our days when we do or certainly feel like doing so, but that doesn't solve anything in the long run. Instead, reacting differently might help all of us. Each of us is really an ambassador for all YPAs. It's not easy, but when we can, let's try to be positive instead of negative, and educate our fellow beings. Let's work to replace their disbelief or pity or fear with awareness and understanding.
"If people don't know WHY you can't do something, explain to them, as simply as is necessary. You aren't silly for not being able to do it, they are for not seeing why for themselves. If you don't explain, you aren't just penalising yourself (bad enough), you are also making life harder for every arthritic person with whom that other person comes in contact. That person will assume that because YOU haven't had any problems with the action, no other people with arthritis will have problems either. So explain, communicate, remove the folklore about arthritis (eg only old people get arthritis) — not just for yourself but for all of us… " (The same YPA, who works in a bank)
We first need to come to terms with ourselves, to boost our bruised self-esteem and self-confidence. If that's difficult, I hope chapter 13 will help you get started. A teacher who developed RA when he was 15, Roger Glanville, wrote:
"It is obviously a tremendous task to come to terms with oneself; particularly if the disability occurs after a normal life has been established. When at last one feels able to cope with a newly restricted pattern, resentment against the injustice, the 'big chip' has to be dealt with. One has to try to find one's real character, to deal with other people in a reasonable way, to react normally to all situations, to harbour no bitterness, to be ordinary and normal. On those days when coping is impossible, the barriers go up again; but when one finally succeeds in living with oneself; these barriers collapse completely because they are no longer needed to protect one from everyday high-speed life.
"During the period of adjustment one needs more than anything to feel that there is some meaning in life. Relationships with other people play an important part in finding this meaning, but in order to achieve mutual understanding, communication without tension is desirable. Yet, at the same time one's disability makes one feel not quite right, a little ill at ease, and therefore tense: so the primary task is to combat the tension and spread a little relaxation around. Fit people (the ones with duodenal ulcers, varicose veins, or blood pressure but no outward manifestations of abnormality) find it difficult to be normal with the disabled. They are tense before they start. The first thing they want to know is, 'What's wrong?' And then, 'How long? Never! I thought…! My aunt…! Have you tried…? mud, codeine, turkish baths, vegetarianism, bee stings, cortisone, corks in the bed, real leather shoes, ACTH, REST, EXERCISE, PRAYER?' When these questions have been answered, they relax and sometimes turn out to be quite nice people; just thought they were helping. " (In Paul Hunt's Stigma)
1. The invisibility problem
One of the oddities of something like RA and its cousins is that it can be invisible, even when it's at its most unbearable internally. Someone with early RA has no obvious joint deformity, and unless you use a stick or wheelchair other people may not realise you have problems. Worse still, they may even disbelieve you and think you're just 'putting it on'.
Invisibility's a mixed blessing. It's lovely to blend in, to 'look normal', but sooner or later something gives the game away. Like the times you get up in the pub after a mild shandy or two, and wobble drunkenly (so it seems) all over the place! Like the time you try to get on a bus and find you can't, and the conductor rings the bell and sends it lurching off too soon. Difficult for someone with a visible disability to appreciate, but 'appearing normal ' can build up all sorts of tensions and frustrations:
"I often feel I'm in 'no-man's land' — not incapacitated sufficiently to receive any help (physical or financial) and yet disabled enough for it to literally change my whole life. To be honest, I found it easier to cope when I was at my very worst 2 years ago. Every one was so helpful and sympathetic and the constant pain was so all-consuming that even ordinary tasks became sources of pride in their accomplishing. Now that the pain is in the background and my joints only take it in turns to play up I try to live as normal a life as possible. This is far more difficult, especially when people (including family) start to treat you as a 'normal' person once more … When I'm busy bustling about moving chairs in one of the many meetings I go to, for example, I often feel like shouting out 'Yes, I'm here. Yes, I may be working just as hard as you are. But can't you see I'm in PAIN.' I never do shout it out of course. And one soon learns to hide the pain but I still can't get over the unfairness of it all… " (Pamela W)
To add insult to injury, someone with a bandaged finger may get more sympathy and understanding than you, with your stiff, pain-wracked body. Hardly surprising if all sorts of emotions build up inside, at the frustration of it all, but the invisibility problem means other people are taken by surprise when our anger and exhaustion and pain erupt against them, or turn us in on ourselves in misery. Leading, alas, to yet more misunderstandings.
2. The visibility problem
Arthritis becomes visible with joint or limb deformity, or clumsy body movement, or when you use a stick or crutches or a wheelchair. You may then come up against 'Does he take sugar?' attitudes, when people treat you as a 'non-person' and ask your companion rather than you whether you take sugar, feel cold, or whatever. Some may recoil in embarrassment or fear or ignorance, some may even think you're mentally deficient. They can be patronising and condescending and insulting, even if they don't mean to be.
Arthritis distorts 'body language'. — The way we sit or move conveys false messages. Inner pain can make me look forbidding or fierce, or might stop me walking over to someone to comfort them physically, or bending down to join in friendly play with a child. It's not that I don't care, just that my body's giving false messages. More misunderstandings to be overcome.
Skin problems in lupus or psoriatic arthritis can provoke absurd reactions, even though neither's infectious or contagious. In Michael Leitch's Living with Arthritis, Cheryl Marcus talks about her early days with lupus, before effective treatment started:
"To look at I was quite a sight. I was covered in a rash. I lost my hair completely… A lot of people were scared to come near me, and my son was not allowed to visit me because we were worried about the effect it might have on him… "
Fortunately, with treatment, things improved, though Cheryl then experienced misunderstandings because:
"I now look extremely healthy. A lot of lupus people do. We have nice round faces, some rounder than others — an effect of the steroids we take. I have pink rosy cheeks. This is because I have a rash, which I cover up with powder. I look suntanned. This is because I take an anti-malarial drug which tends to make the skin look yellow. Looks are truly deceptive. I know a lot of lupus people get very frustrated when people tell them how plump and well they look, when all the time they know it is because they are on extra steroids and in fact are feeling grotty. "
Both the Psoriasis Society and Lupus UK can give lots of tips and support. R H Phillips PhD's Coping with Lupus, (Avery Publishing), available through Lupus UK, includes tips on coping with emotions, and 'other people'.
3. The youth problem
The oh-so-tedious disbelief that the younger ones amongst us could possibly have arthritis. Even those who do believe us may find it hard to understand how devastating it can sometimes be, physically and psychologically. Like one unhelpful doctor who chided me "Stop worrying and go out and have a good time." Maybe he meant well, but the message that came across was one of total lack of understanding, and only added to my misery.
Some people are blinded by preconceptions based on the older-type arthritis, osteoarthritis (OA) in the over 6Os age group, or the mild twinges type of 'rheumatism'. Even one arthritis group organiser bluntly told a young friend not to bother going along to a local meeting unless she was prepared to help out physically as all the members were 'elderly and arthritic'. In fact, in terms of number of joints and extent of joint damage, and its impact on her life, she was a good deal worse off than many of the elderly members.
Inside us youthful spirits and desires tussle with uncooperative, very elderly-feeling bodies, and it's hard for contemporaries to understand that the carefree spontaneity they take for granted is now often an unattainable luxury for us. It's hurtful to feel different and unable to keep up with friends.
Usually, when you're young, bodies can be left to look after themselves, leaving plenty of time and energy free for other concerns. But with arthritis, our bodies are 'too much with us', reminding us constantly of their painful, uncooperative existence. Usually, too, youth goes hand in hand with boundless energy. 1,001 things can be packed into a fragment of time, and time's an unimportant dimension. Suddenly, though, with RA and its cousins, time looms large, and the smallest tasks can take forever to accomplish. How many other under 6Os take at least an hour to get dressed, and have to spend most of that time consciously thinking about the process? Yet another area where youthfulness makes having arthritis more difficult, more liable to misunderstandings. Arthritis really is an appalling waste of time!
4. The problem of how to explain its oddities
Samuel Johnson said, "Those who do not feel pain, seldom think it is felt." It's difficult enough to explain where it hurts, how it hurts, and in what ways it restricts you. Even more difficult for other people to understand something that's so variable and unpredictable:
"What I can do today, I may not be able to do tomorrow (although I may be able to do it again the day after). " (A YPA, younger person with arthritis, writing in In Contact)
If, say, you'd lost a leg or an arm instead, after a while you'd have learnt the limitations and you'd be able to explain your 'static disability' fairly easily. A once and for all process. But with RA you could be agonisingly stiff at 6 am, barely able to move, yet get to the office at 9.30 and appear to move reasonably easily. One day you might feel lively enough to have a mad fling at a disco, and yet the next week be barely able to move across the room. A strange switchback existence, 'up and down like a perishing yo-yo'. Not surprising other people are baffled by this 'fluctuating' or 'intermittent disability', but oh how cruel any disbelief can seem.
How can we explain another characteristic that causes many misunderstandings? Sometimes we're accused of 'not trying', of being unnecessarily clumsy. People don't understand it's something we can do little or nothing about. We would if we could. One YPA described it as feeling as if you have to struggle through thick mud to do anything. Grace Stuart (Private World of Pain, Allen & Unwin, 1953) described:
"That strange powerlessness — so typical 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!…
"There has been no time when, if I could at all do something, at whatever cost, I did not do it. [Nonetheless, she had] the bitter experience of not being believed — and the bitterer experience of not being able to explain… Often in those days I wanted to cry out 'I am doing more than my best. Please say that you believe me!'"
Something else non-arthritics find hard to understand is what has been called 'the interaction of different disabilities'. Maybe you can do something, like dressing, or making a cup of tea, but at considerable cost in time, frustration, and pain:
If one sets out to assess the functional ability of a person with severe arthritis in, for example, the kitchen, one is likely to find that many individual activities are within the sufferer's capacity. However, effective preparation of a meal calls for integration of these activities, particularly by ease of movement between one part of the kitchen and another, and it is especially at this level that the arthritic experiences serious difficulty. Similarly, affected individuals are usually capable of dressing themselves but the fact that the process may take well over an hour cannot help but distort organization of the day's schedule. (In the World Health Organization's International Classification of Impairments, Disabilities, and Handicaps, a manual of classification relating to the consequences of disease, Geneva, WHO, 1980)
These characteristics of 'intermittent disability' and 'interaction of different disabilities' can cause special difficulties if you're being assessed for a benefit: 'Can you dress yourself?' 'Yes, but… ' How often does the assessor listen to your 'but'? Make them listen! Why not show them the quotation, above, and this:
Insensitivity to these dimensions leads to arbitrary administrative distinctions, that arthritics are not totally lacking in the ability to move often renders them ineligible for benefits such as a mobility allowance, and yet in terms of effective mobility to allow integration in society they are as much in need of this type of help as many others. This failure arises from failure to distinguish between disability assessments, which focus on individual activities, and the overall handicap or disadvantage that may result from the interaction of different disabilities. (ibid)
Thankfully, this characteristic is now included in the official guidance on implementing the Disability Discrimination Act. It's called 'cumulative effects of an impairment':
B4. An impairment might not have a substantial adverse effect on a person’s ability to undertake a particular day-to-day activity in isolation, but its effects on more than one activity, taken together, could result in an overall substantial adverse effect.
For more information visit the Disability Rights Commission (DRC) website or use their helpline enquiry service 0845 762 2633, textphone 0845 762 2644.
Look back too at chapter 12, at the way Carolyn Wiener described the 'uncertainty' of RA. Her description may also be worth showing to other people and officials who can't understand the quirks of chronic inflammatory arthritis.
Two poems, which appeared in In Contact, express in just a few words what it can feel like to be a younger person with arthritis:
Arthritis is no friend of mine, Arthritis is a pain.
He's never invited, but always delighted, to make me cry again.
You wake up each morn stiff as a board, and say to yourself '0 Lord, 0 Lord',
Why curse me with this dreadful disease, when all I want is peace and ease?
The weather gets worse, and so do you, and you wish the sun would come shining through
To ease your pain and make you smile again.
Can't climb the stairs. Crippled in chairs. It really is a shame.
Arthritis is no friend of mine, Arthritis is a pain.
and the second poem:
Arthritis really is a bind; when I walk my joints all grind.
Sometimes I have to walk with sticks, it makes me feel I'm ninety six.
I rub in creams and take my pills, but these produce some other ills.
Yes, arthritis really is a bind: osteo, or the other kind.
People wonder 'what has she got?' To tell the truth, not a lot:
Just worn-out bones that creak and groan, and oh the pain, it makes me moan.
Yes, arthritis really is a bind, but I thank God that I'm the kind
That sometimes sees the funny side, of this disease I can't abide.
5. The folklore problem
Folklore confuses inflammatory arthritis with those relatively trivial aches and pains, loosely called 'rheumatism' or 'arthritis'. People don't realise that there are over 200 types of rheumatic disorder, ranging from the trivial to the very serious, sometimes even fatal. Not only joints but almost any part of the body can be affected. Then they wonder why you're so put out when they compare your RA/AS/whatever with their elderly aunt's 'twinges in her shoulder' or their own occasionally 'rheumaticky fmger'!
An even worse folklore is the belief, even among YPAs (youger people with arthritis), that little or nothing can be done about rheumatic disorders, and the belief, too, that 'arthritis is just a part of growing old'. Such fallacies are very damaging, for much can and more could be done if these disorders were taken more seriously, and if far more resources were devoted to them:
In one study it was found that 42% of arthritic sufferers could have benefited from specialist help that had not been made available to them. These deficiencies reflect low levels of demand by the public and insufficient appreciation of the problems by policy makers (or politicians), but they have been compounded by professional ignorance in some localities and this leads to pepetuation of neglect. (If You've Got Arthritis, Expert Advice is Badly Needed, ARC, 1983)
6. The fatigue problem
The struggle to cope, and to 'keep going', can lead to tremendous physical and emotional fatigue, again difficult for other people to understand. All they may see is someone who spends a lot of time withdrawing from social relationships and activities, wanting time to be alone, seemingly anti-social. A YPA who works may give up other forms of social contact, merely to keep enough energy in hand to be able to cope with work. Or a YPA may have to give up work just to find enough energy to keep a marriage going.
Fatigue can make us lose patience, and get angry at innocent remarks. 'Can't you manage to pick it up yourself? ' someone asks, in all innocence, only to be snapped at when in my exhaustion I interpret it as an unfeeling snide comment.
The struggle merely to get out of bed and face the day may so exhaust a husband with inflammatory arthritis that he does little for the rest of the day, only to be snapped at by an unthinking wife who sees only all the odd jobs around the house that need doing and an apparently lazy husband ignoring them. More misunderstandings to sort out…
7. Other people's handicaps
Many people genuinely would like to be helpful or react 'in the right way' if only they knew how. Others think they know how but end up being just the opposite! As Corbet Woodall wrote "Handicap is experienced by non-disabled people when faced with a person who needs special consideration." Once understood, this is one handicap we can do a lot about.
Some people act oddly towards us, when they see something's 'not quite right'. A few are just plain bloody-minded, but more usually they're just afraid or embarrassed, or ignorant. "They may be afraid you're going to fall in a fit or be eccentric in some way" (Corbet Woodall again). Or they sense you need help but don't know what help to offer. If you feel upset at someone's odd behaviour, tell yourself that on the whole people are kind or understanding at least once they know you have a problem and are told how they can help, or something of the whys and wherefores. As for those who can't be taught, pity them and give them up as a bad job. They aren't worth wasting your precious energy on.
Our nearest and dearest, and our friends, may feel especially helpless when they see the person they love struggling and in pain. They can feel 'handicapped': something it's easy to forget. It's sometimes harder to be an outsider looking on, wondering helplessly what to do, than it is to be the actual 'sufferer'. We can take the initiative in showing them what to do, in making them feel needed and useful and encouraging their understanding of what's going on.
Sometimes the problem's just the opposite — other people thinking they know what's best for you. In the early days or bad times some of this mollycoddling may be welcome, but in the long run you'll need gently to educate them into accepting that you can take charge of your life and aren't just a helpless victim. You are the expert, but (important) they can still play a welcome part in making life easier for you.
8. The problem of needing help — sometimes, but only sometimes
A thorny area. You may need (or want) a lot of help one day, and very little the next. No wonder other people get confused! One moment their help's fiercely rebuffed, the next they're accused of being heartlessly unhelpful!
As you become more skilled at dealing with the arthritis, you'll learn in which areas you do regularly need help. In other areas your needs may be unpredictable. Try to come to a clear agreement. Explain the predictable areas and how help can best be given. Agree that, otherwise, no help should be given, unless you ask. Promise that you will ask for help when you need it. Do what you can yourself, even if slower and clumsier.
Explain that one of the best forms of help is simply not to 'hinder': not to create extra work and difficulties, eg by leaving things lying around that get in your way, or have to be cleared up. And implore them not to move anything of yours without first asking permission. We all know how maddening it can be to spend hours getting something into a manageable position only to find it's been moved away again the moment we turn our backs…
Work out how to use other people's desire to help constructively, so they really do help and so you really are grateful. Direct proceedings tactfully so you don't end up worse off than when you started! Work out, too, how to curb any over-helpfulness! Ironically, though they don't realise it, people who are over-helpful can make you feel more disabled:
"Two races of men! Those who make disability more disabling and those in whose presence one may even, mercifully, forget." (Grace Stuart, in Private World of Pain)
We don't want to put people off offering help — I feel we need to encourage them to make the offer, but then wait, and listen to our response: if help is wanted then it needs to be provided as requested, no more, no less, and without fuss. That's definitely the best sort of help! We in turn need to avoid gruffly rebuffing the offer — another time that help may be desperately needed. We can say something like 'thank you for offering, but I'm fine at the moment', or 'thank you for offering; perhaps I can explain how best you can help me'.
Look back at 'Balance the giving and the taking' (chapter 13), for more thoughts on 'help', and at chapter 26 for thoughts on asking for and giving help within a relationship.
9. Minding about 'what other people think'
Have faith in yourself, and the courage to be different, if necessary. Don't let 'what other people think' influence you. More often than not, they're thinking only about themselves, anyway! It's not easy to be self-confident when you're laid low emotionally and physically, and long to be inconspicuously 'normal', but it'll come, in time. Remind yourself that you are the only person who can decide what's right for you. Don't let 'what other people think' dictate how you organise your very different, unique, life.
Minding about 'what other people think' may be one reason you won't use a walking stick, or gadgets that would make life easier. But why let 'other people' dictate that your life should be more difficult than it need be? Are you telling them how they should lead their lives? For tips on coping with minding about the arthritis, and minding about other people's reactions, look back at chapter 13, 'Learning to live with the minding'.
If you're naturally extrovert, you're lucky, you're already well on the way to overcoming problems, but many of us are shy and retiring, too 'bruised' emotionally to want to come out of our shells. I believe we need to try, though. Margaret Mayson developed RA in her 20s. In Paul Hunt's Stigma she wrote:
"In time one learns a technique in handling the well-meant but tactless remark, but I was surprised to find how long I remained sensitive to comment on my crutches. A typical instance occurred at a social function when an acquaintance, completely uninhibited herself, called out, 'whatever is the matter with you?'. My immediate and ignoble impulse was to make a facetious reply, 'Oh, I enjoy walking like this.' But I muttered, 'It's just the arthritis', feeling thoroughly ashamed. I would have felt quite happy to be able to say I'd broken a leg skiing or riding, because a healthy body, temporarily maimed, is very different from a body affected by a progressively crippling disease. "
Chapter 13 will help. Remind yourself to keep things in perspective. Most especially, keep alive your sense of humour. Remember too:
— Other people are well-meaning but ignorant; they need educating!
— It's other people who are handicapped, not you.
— Other people can't mind-read.
— You're not on your own in the Joe Public v Arthur Itis match, though it sometimes feels that way.
— Overcoming 'other people problems' will help not just you, but all YPAs.
— The person you're talking to may be disabled too one day. What you say or do now could be important to him/her in the future.
— More flies are caught with honey than with vinegar.
Try, too, putting yourself in other people's shoes to understand their reactions, and how best to tackle any difficulty.
To explain or not to explain?
Have a few facts and figures, even a funny story or two, ready for the times you do choose to explain. Where possible, I try to explain, briefly. A taxi-driver looks puzzled as I contort my way into his cab and says 'what have you been up to then?'. [Not again, I sigh, inwardly, and take a deep breath.] 'Oh, it's rheumatoid arthritis'. [I know what's coming next] 'Never, not at your age!' 'Well, it's amazing how many younger people do get it, sadly. Even small children' .[Then, if he's looking interested, and hasn't already started to tell me about his twinges, I add a few impressive facts and figures] 'Hmmm, yes, there are actually about 200 types of rheumatic disorder. Amazingly…etc'
Long explanations aren't always appropriate, for instance with children. They're naturally curious and want to know what's 'wrong'. A friendly, unembarrassed response is important. Upon your reply will depend future public attitudes. 'I've got a bad leg' might do, or, if the child's older, you could add 'It's something called rheumatoid arthritis'. If the child's interested in your stick or long-reach gadget or wheelchair, use that interest constructively, and show them how it works. The worst thing is a child who's hustled away and told off by an embarrassed parent…
Coping with questions/remarks (sometimes very silly ones)
— 'But you're so young.'
— 'But you look so healthy.'
— 'Drunk again, dearie?'
— 'What on earth do you find to do with yourself all day?' (As a senior nurse pityingly said to a very talented RA friend in full-time employment…).
— People think because your legs don't work properly your brain's packed up as well. What idiots. Stun them with a long account of all your talents, and continue with impressive examples of what other YPAs get up to.
— 'You're wonderful. How do you cope. I couldn't'. Maybe you demur with a blush, saying 'oh no, I'm not wonderful' or suchlike, but do also give yourself a quiet pat on the back. Writing this book has really brought home to me the incredible courage and achievements of YPAs who've worked out ways of 'living with' arthritis. Don't squirm!
— 'There's plenty worse off than you.' Well — yes and no. I loathe comparisons of disability. Just because someone's in a wheelchair doesn't mean they're 'worse off' than a non-wheelchair-bound YPA with active RA/AS/lupus/whatever; the former may be a pain-free strong-armed London Marathon winner, the latter possibly unable to get across the room to make a cup of tea, let alone raise it to her lips, even in a wheelchair… Besides, thinking of 'others worse off than me' doesn't make me feel better: at really bad times, I feel if what I'm going through is this bad, what must it be like for them? I end up feeling thoroughly depressed!
— 'Count your blessings' — Yes I do, over and over again.
— 'Isn't your husband/wife/mother/father wonderful…' 'For putting up with you' is left more or less unsaid. Well, yes, they certainly are wonderful — but I do resent the implication that I don't contribute anything, or have anything to put up with (!) in return. The 'disabled' partner may even be the stronger half in many ways, in emotional strength, good sense, household management, etc.
However… On the whole I'd rather people asked questions, even silly ones! At least then misunderstandings can be got into the open and cleared up. Some people would like to ask, but hesitate to do so. We YPAs can each develop our own style of making such people feel 'comfortable' about asking. A useful spin-off if you're fund-raising is that it gives you the opportunity to answer questions about why you 're doing it.
Getting over some invisibility difficulties
You look young and healthy but feel b— awful, and simply can't bend this or that way to do whatever has to be done. Nothing for it, alas, but to make the invisible visible, or audible.
You drop something standing in the bus queue, but can't bend down to pick it up. No need to go into details, but ask someone briefly to help; something like 'I've got a bad leg and can't reach to pick that up; please could you help?' I was temporarily flummoxed when a doddery old lady dropped her bag and doddery young me was the only one to notice. Luckily I had a voice I could use to ask an unobservant someone else to help.
Another time, voice and eyes again proved their superiority. Sitting in Outpatients, I suddenly noticed an old man silently keel over and sink to the floor. Of the 30 or so people nearer than me, not one noticed or moved. Doddery me had to raise the alert!
If you're getting a lift in a car or taxi, mention that you'll be a bit slow getting in. It'll stop them rushing off too quickly. If your hand won't turn or bend to take change in a shop, try holding your purse out firmly and ask the assistant to count it in. Watch carefully to see it's correct. I used to be too proud to do this, and got sworn at by an assistant when all the coins she'd 'put in my hand' fell straight out into every nook and cranny. Hurtful at the time, but she wasn't to blame. How could she know?
Getting over some visibility difficulties
Maybe your illness is all too visible. People stare. Rude, and maddening. But the stares aren't necessarily meant to be hostile. Most people stare at something; if it weren't you it would be something or someone else. Don't you ever find yourself staring or looking twice at something unexpected?
Glare in return if you must! But if you're able to give them the benefit of the doubt, try a smile instead. Show you're really quite a civilised human being! Be a good advert for the rest of us YPAs. You might even get a smile and a friendly chat in return. A stare treated the right way can banish prejudice and even lead to friendships which would never have started if something hadn't attracted the other person's attention. Even in unfriendly London I made friends like this along the way to work.
Smile and the world smiles with you
Someone said 'Rheumatics are always smiling'. I dislike generalisations, but if that's true at all, it's certainly not that we're always happy… it could sometimes be a cunning device to get the world on our side. (And no, I don't like being described as something akin to pneumatics, like the Michelin man…)
A sense of humour certainly helps tremendously. Marie Joseph has a lovely one, and her autobiography is well worth reading. She's even able to chuckle at the maddening unpredictability of RA:
"It does … ensure that you never become a bore. If asked how you are, and you are foolish enough to answer trnthfully, there is always a different part to complain about."
White lies are useful too, as she says:
"I learnt quite early to answer 'fine' every time my health was enquired about, and I'm sure that was the way I kept my friends, and ensured the sanity of my family. 'How do you do?' is one of the most hypocritical phrases in the English language. No one really wants to know how you do, however much they may love you; they have their own lives to be getting on with… " (One Step at a Time, Arrow Books)
The best medicine is the love and support of a person or people close to you. For many of us, this is what keeps us going. But the closest relationships can also be the ones most strained by arthritis. Things that cause problems in relationships outside the home cause misunderstandings inside too, indeed can sometimes seem even worse because home's the one place you feel you should be understood without endless explanations.YPA Janet Flower put into words some thoughts that may sound familiar. In an article that could have been called 'Should they nag me, leave me, or help me?', she wrote:
"Do you ever think that people, even those closest to you, just don't understand? Have YOU ever stopped to consider what living with a person with arthritis is like?
"Just because our nearest and dearest live with us doesn't mean they'll automatically become experts on people with arthritis and their needs/behaviour. Knowing more than the average person about its nature and treatment is not necessarily any help when it comes to day-to-day normal life. No doctor could hand out a guide to parents/partners. WE all have varying arthritis and varying needs of sympathy/nagging; THEY all have different levels of patience, encouragement, sympathy, optimism, etc. Yet most of us expect our family to be understanding at all times but do we really stop to explain our difficulties or consider theirs?
"For instance, I used to struggle at home to manage something and if no-one noticed I'd think 'typical — no-one bothers to help'. Then when one of the family came over to assist, what was my reaction? Grateful thanks? No. A terse 'I CAN DO IT!'. So, no wonder they never knew whether to help or not. Yet I wouldn't expect strangers to realise I was in difficulty, or if they offered persistent unrequired help, I'd politely decline or accept without any sign of irritation.
" Finally, I realised how unfair I was being to my family. That they weren't always aware of my problems unless I told them and that it was just as difficult for them as anyone else to know whether to nag me, leave me or help me.
"Now I try to anticipate and communicate as much as possible to everyone and not expect the family to be experts or psychic. Another revelation was the 'guilt factor'. Realising that my Mum, especially, at times blamed herself for my illness. This was why she tried to protect me from things (not as I'd thought, to stop me enjoying myself). And why, at other times, she pushed and nagged at me for my own sake, (not as I'd thought, because I was an irritating burden).
"So many other families who seem uninterested, or too harsh, or too over-protective … are acting in the way they think best, rightly or wrongly. What is not perhaps realised by the person with arthritis is the awful pressure of guilt, responsibility and uncertainty their families come under. Doctors can't always tell whether a family is being too harsh/soft, etc. The family probably doesn't realise — and the person with arthritis may not either. It does therefore rest with us to guide and help, not just the public at large, but our own families, to know best how to help us.
"Often I've come across fellow arthritics who are scared to attempt any independence, who get no encouragement from their family. Others are fiercely independent but left with bitterness at the harshness of their family's attitude. The great majority, of course, find a happy medium but even so, a great deal of us could really benefit from looking more deeply into the matter, and realising that caring for someone with arthritis can be just as draining emotionally and physically as it is for the actual sufferer. " (In Contact)
In Michael Leitch's Living with Arthritis (Lennard/Collins) Phil echoed the worrying thoughts of many married people with RA:
"I was very concerned about my husband, and I think what I felt must be a fear with many women who have arthritis. He has always been very supportive, and I have been lucky in that respect; but in the early days I remember thinking; 'What am I going to do if he leaves me?' I didn't want him to go — of course I didn't — but if he had decided to leave us, I would have understood.
"The husband of someone with arthritis has a lot of pressure on him. He comes in the door after a long day at work and he does not know what he is going to find. It may be all right: she may have felt OK and been able to manage. But supposing she had had a bad day, which had been a real struggle to get through — what then? I can imagine husbands standing outside the door and thinking, What's going to face me tonight?"
Arthritis brings changes that the whole family has to adjust to, not just the YPA alone. This topic really needs a book to itself… More in later chapters about special relationships. For a male point of view, read Corbet Woodall's A Disjointed Life (Heinemann 1980).
"I'd no idea, until it got really bad, that I had so many friends, good friends, true friends, kind people who will put themselves out time and time again to help. I think I appreciate people much more now and understand them better — understand their pain, their sufferings, be they physical or emotional. Arthritis has forced me to feel more, see further, understand more fully than ever before." (PB)
And a recently separated YPA:
"Then one weekend all my (our) friends came over; everyone! — it was an exhausting few days and it wasn't until they'd all gone home again that I realised how lucky I was. I probably won't see any of them for two or three months at a time, which seems endless, but the value of their love and friendship brought me back and now I want to fight."
Real friends are worth their weight in gold, the ones who stick with you. A special friend can help offload some of the misery which you can't offload on your nearest and dearest and give you support and breathing-space to weather the storms:
"I was short and bad-tempered with the kids and hardly spoke to poor old F. Finally I became so screwed up that it was obvious even to me that something had to be done. Reluctantly (I hate having to ask for help) I forced myself to pick up the phone and dial the number of a very understanding friend. She helped me over the bad bit until things settled down again both physically and mentally…" (Mary*)
In the early days, friends probably react as they would with any other short-term illness. They'll treat you in a special way, and will quite accept if you can't do something. In time, when the short-term illness ends, the 'special treatment' comes to an end too.
Arthritis, of course, just has to be different, and some friendships may suffer, even end, in puzzling and hurtful ways. As time goes on, some friends may tire of waiting for things to get back to normal. Others will try harder, but even so may find it difficult, and puzzling. They can't see the pain, can't understand why one moment you leap down the stairs, yet another time take an eternity, struggling down on your backside. So remember to explain things to them. To avoid monotony, you could vary the reasons why you can't do things, and don't over-do the explaining! Corbet Woodall wrote:
"I've talked to one or two close friends … and they have said that the worst part for them was their inability to help and thus their frustration. The fact that they were constant and loyal enough to want to help was more than enough, because it took away much of the sheer loneliness which a long-term disease involves." (In his autobiography A Disjointed Life)
In time you and your real friends will adjust. Talking to other YPAs will give you no end of tips; other parts of this chapter will help too. Just a few ideas here to be going on with:
When you're going through a bad patch it's easy to blame everything on the arthritis, especially if you're feeling lonely and finding it hard to meet people and make friends, but plenty of people without arthritis experience shyness and loneliness too. Arthritis can, it's true, create physical barriers which make it hard to get out to meet people, but if these can be overcome, then many of the remaining problems, like shyness and lack of confidence aren't so different from other people's. So reading something like Dr Phyllis M Shaw's Meeting People is Fun (Sheldon), and other books at the end of this chapter can be helpful, even though most of the books listed aren't specifically 'arthritic'. Best of all, have a chat with another YPA (younger person with arthritis), or a sympathetic somebody else.
Overcoming physical barriers
For ways of tackling any physical problems of getting out to meet people look back at chapter 24, 'Out and about'.
Keep your horizons as wide as possible. Meet other people through work (paid or voluntary), through hobbies, through evening classes, Open University, residential study weekends, through local special interest organisations or a multi-activity social group like Nexus (see chapter 35), and through organisations like PHAB and Arthritis Care. If you're shy about going alone, why not phone or email the secretary first, to explain? Maybe one or two of the members could come along first to meet you at home. See chapter 35, 'Pastimes', and chapters 13 and 33 for more ideas.
Even if you can't get out much, there are ways you can communicate with other people from home, most obviously of course via the internet! There are also still some less modern ways, such as playing chess or scrabble by correspondence, or, like Janet Mason, writing to penfriends, by cassette if that's easier:
"Up to now I have got five actual Pen-Pals (people who I write to regularly and have never met), three female and two male, and then I have four or five friends who I met either at school, college, or in hospital and live too far away to see who I keep in touch with regularly. Then I have 'annual' friends as well, if you see what I mean so I am kept quite busy. [And] I often write to television stars, pop stars, etc, asking for their autographs. I love doing it. Easier than talking on the phone I think, and cheaper!!… "
You could help run a DIAL information service, or invite people round to you, for musical or book-reading/play-reading/discussion evenings, or card games, or organise a birthday card reminder service, or whatever!
Many of us, when unattached, hope that in meeting other people we'll meet 'someone special'. Wonderful when we do. Many of us have been lucky and met someone special, as you'll see from the 'Marriage' chapter, for instance. But don't, please, limit your horizons by becoming over-obsessed with that hope. Simply meeting other people and making friends is wonderful too, and it's easy to lose sight of how precious friendship can be, whether you live a solo life or in partnership.
Who knows, meeting that 'special person' may happen when you're least expecting it. S/he could be the sister or brother or son or daughter of anyone you meet anywhere! I met my special person through work — he was the friend of a colleague's boyfriend.
Some YPAs, now married, met through a Young Arthritis Care meeting or holiday. At least one YPA, Mandy, boldly tried computer dating. It was a bit nerve-racking to start with. Her first date was with Simon:
"We arranged to meet at a pub in Essex approximately mid-way between London and Southend … at this point I began thinking 'Hell, what about old Arthur-ritis?' You see, on the computer form there was no section about physical disability… I hesitated to put anything about it in my letters, because quite frankly some people have odd ideas about arthritis and it's hardly an asset when meeting members of the opposite sex. 'I'm blond, slim, with blue eyes and a pair of ravishing arthritic kneecaps…' Hmmmm!
"When I arrived at the pub my knees were like pillars of jelly! Luckily, Simon had positioned himself fairly near the door so I didn't have to wander around the pub feeling conspicuous. I needn't have worried — we soon began talking and the evening passed really quickly. We enjoyed each other's company. The dreaded arthritis only came up in conversation when I found I was unable to undo the cream container served with the coffee! Simon had noticed my 'funny' fingers earlier but being a polite gentleman he hadn't liked to ask me what was wrong! I explained briefly and was secretly pleased to discover that it didn't seem to make a lot of difference.
"I was most impressed with my first date and this encouraged me to go out with several other people afterwards … The odd disastrous evening would occur… but really I found these occasions to be surprisingly infrequent. Some months and several dates later I still thought about my original meeting with Simon and realised that I liked him quite a lot. One day, on impulse, I rang him and we decided to meet yet again…
"I know a lot of people are put off by the 'contrived' aspect of computer dating agencies, but basically, all they do is put you in touch with individuals whom you are most likely to get on with — after that of course it's up to you … Don't make the mistake of thinking that anyone who can't find a boyfriend/girlfriend in the normal way must be a bit odd; members can be people moving to a new area looking for friends, or separated people getting over relationships. All I can say to anyone thinking of doing likewise is go ahead… you've got nothing to lose!" (In Contact)
Not long afterwards, Mandy and Simon got married.
There are millions of references on the internet to ‘online dating’ but be very careful! The Dateline computer dating agency has been in business since 1966 and is a member of the Introduction Services Federation (ISF), an independent body set up to oversee dating agencies and introduction services. The Dateline website includes a helpful set of safety guidelines.
On the question of joining as a disabled person, the website says:
Having the largest database in the UK, our matching process has to be completely computerized in order to deal with such a large membership. It may well be that you find our system will work successfully for you. However, we must stress that the people we match you with will be unaware of your particular circumstances, and it will therefore be your responsibility to advise them about this. We would very much hope that the response you get would be positive, sensitive and understanding, but obviously we cannot guarantee this.
Overcoming emotional barriers
Arthritis can sometimes create emotional barriers when we meet other people, when, for instance, we feel self-conscious and ill-at-ease with our bodies, and out of touch with healthy contemporaries. Or when other people feel ill-at-ease with us. In Meeting People is Fun, Dr Shaw reminds us that other people experience similar feelings:
"Some people who have never regarded themselves as particularly shy discover at some stage following a crisis in their life that it is difficult to make relationships with other people or even to approach them. Sudden bereavement in early or middle life, the arrival of a congenitally handicapped child, redundancy and other events which change circumstances may bring on a form of shyness or social anxiety."
We can start to do something about this once we understand why it happens. Look back at the earlier section on 'How does the arthritis create problems between us and other people?' Dr Shaw, again:
"You have to remind yourself time and time again that other people are well-meaning but ignorant. They do not know how to cope with your situation, they realise how grave it is and would like to help but are frightened all the time of interfering and putting a foot wrong. This is why bereaved, separated or divorced people sometimes complain of being shunned or avoided…
"Other situations include physical catastrophe from outside, such as assault, burglary or an accident, and although these might seem obvious cases where friends and neighbours could rally round, yet again we find the familiar problem that they are frightened of interfering and worry that they will say the wrong thing. Once again, the sufferer has to make the first move. "
Encouraging other people to relate to us in a friendly and comfortable way comes, with time and practice. The old tricks really work, like taking a warm, friendly interest in the other person, asking them about themselves, and cultivating hobbies and interests which you can share, taking your mind and theirs off the arthritis. After all, arthritis isn't the most important thing about you, so keep it in its place!
Sometimes the way we react to the arthritis can indirectly put people off. Pride and a fierce desire to be independent may make us appear gruff or aloof. An over-obvious craving for reassurance can be off-putting too. Insecurity may make us mumble, creating other misunderstandings. Try to appear calm and quietly self-confident, even if that's not how you feel inside.
Please, for the sake of the rest of us, don't fall into the trap of becoming a 'professional arthritic' or 'professional moaner'! A mention now and again's OK, and we do want to educate people. It's apart of your life, yes, but only a part. Please avoid giving the rest of us a bad name!
For more tips look at the books mentioned at the end of this chapter, and look back too at chapter 13. You may sometimes wonder if it's worth making the effort at all, but that's normal:
" By and large, in our society where there are few rules and little is taught in the formal way, we have to learn by trial and error. This means it takes quite a lot of courage and it is not easy for any of us to learn social confidence easily. Knowing this will perhaps help you be more tolerant of your own shortcomings." (Dr Shaw again)
Feeling lonely
It's all too easy to feel like Anne Ryman, when she had RA, in her teens/twenties:
"I felt a lot closer to my mother and grandmother's friends than those my own age. My contemporaries were all racing round going to all-night parties, and getting engaged in their droves, and I felt as if I was on another planet. "
Yes, but try not to let loneliness get to you or make you bitter. Bitterness doesn't help with making friends. Work at feeling happy alone, hard though it may be at times. Loneliness and being alone are different. The latter can be enjoyable and does have its advantages. You can get up and go to bed when you like, watch what TV you like, and be as messy as you like. No one else's mess to put up with, and there's a lot to be said for being able to do things at your pace, knowing that you'll find things exactly where you left them! Paradoxically, the happier we are at being alone, with ourselves, the happier we're likely to be in relating to other people.
Even if you can't get out, you might feel less isolated if you join an internet chatroom or forum, like the lively forum on the NRAS website. Some of the members post emails almost every day and there's a very friendly, caring atmosphere.
If loneliness is getting you down really badly, don't forget the Samaritans (known worldwide as Befrienders International) who are always only a phone call away. Give them a ring. You can call: 08457 90 90 90 for the cost of a local call (textphone: 08457 90 91 92), or write (to Chris, P O Box 9090, Stirling, FK8 2SA), or email: jo@samaritans.org And try the various self-help and support groups too. Look back at chapter 15 for the benefits other people found from joining a self-help group. Look back at chapter 13 on working towards a positive philosophy, and at chapter 14, the section on 'talking therapy'. Look too at all the ideas in chapter 35 for developing interests which you'll be able to share with other people.
Boyfriends/girlfriends
The worries of being lonely may idiotically be replaced by other worries the moment a boyfriend/girlfriend comes on the scene. Some, it's true, may be put off by the arthritis — but those are the ones not worth bothering with anyway. If it wasn't the arthritis, there'd be some other paltry excuse. Take heart from a 25 year old girl with RA:
" I would like to tell young girls who have arthritis not to give up and not to think boys don't want them. I was engaged to a boy for three years who knew from the beginning about my complaint. Just one day he broke it off because I had arthritis. I was heartbroken, but some months later I met Steve, my husband. I have been in hospital many times, but he has always stood by me. I think I am very lucky." (Under 35s News no.10)
And another writer, in In Contact:
"… what is awkward, in my experience, is when you get the feeling the person wants to ask you about it, but doesn't like to ask. Or when they do ask it is a question of telling them enough without going into your whole medical history. I have had people ask me out merely because they 'felt sorry for me' and on the other hand not asking me out because yes, they were put off' by the arthritis. On the whole though most blokes do simply accept the arthritis, and naturally this is better for both parties and means problems can be dealt with at the time, together, and without embarrassment or feeling you've got to keep up an image…"
Those of us who developed arthritis very early on may find we missed out on what Peter Nightingale, in Michael Leitch's Living with Arthritis calls 'the social growing-up bit',
" Everything takes longer if you have arthritis, which is why at the age of 32 I am still living at home with my mum and dad. This is not unusual among the people with arthritis that I know, but it is unusual among the population as a whole … I never used to mix with anyone after school. I went to a single-sex school, I was picked up in the afternoon and taken home, and that was it … The result is that you need more time to grow up and mature… "
So finding someone special might take an extra long time. I didn't find him until I was 32. Other people I know have suddenly discovered him/her in their late 20s, or 30s. At least by then you've learnt better how to deal with the arthritis and its wily ways. Look back at how Mandy met Simon in the section 'Meeting new people, and making friends', and at the comments there on computer dating.
A word of warning on the boy/girlfriend scene. Some of us have been in the situation where we're so desperate for a boy/girlfriend we've allowed ourselves to fall for someone we wouldn't normally have looked at twice, and regretted it. It's a difficult situation to extract yourself from. Be choosy, arthritis or no arthritis. Watch your motives as well as theirs! Reginald Ford warns about another stumbling block for some young men:
"Many women, especially those of a certain age and experience (or lack of it), think they are perfectly safe in mothering or sistering anyone suffering from apparently incapacitating disablement. They are genuinely embarrassed and shocked when they find that the protégé has normal masculine feelings — perhaps even stronger because of enforced suppression. They feel he has let them down if he reacts in a normal way, and many a beautiful friendship has ended in protestations of injured innocence and misunderstandings on one side, and on the other deeper bitterness and disillusionment. Pity is no basis for any but the most temporary or superficial relationship. " (Writing in Paul Hunt's Stigma, Geoffrey Chapman, 1966)
I seem, alas, to have talked an awful lot about problems with other people in this chapter. Sorry! That's not the whole picture. But I do believe that it helps to understand the problems, before then pushing them away where they belong, into a corner.
Let me reassure you there's plenty of joy and love and happiness and fun out here in our relationships with other people, be they family, lovers, friends, or neighbours, work colleagues, acquaintances, or whatever. For me certainly the most important thing in coping with the arthritis has been the support of a loving, imaginative, and understanding family and some wonderful friends. We've had our problems, but many can be overcome. So get what problems you can out of the way, then relax, have fun, and make the most of the brighter side of life.
'Laugh and the world laughs with you; weep and you weep alone.' Maybe sometimes you will weep, but remember you don't weep alone, because we other YPAs also know what the problems are. Remember there'll be good times too, when you will be able to laugh. Laugh and we and the world will happily laugh with you.
Only some of the books here mention chronic illness or arthritis, but they're nonetheless worth looking at. Look too at the books in chapter 29, 'Personal accounts of arthritis'.