Priestess Smiling Coyote out!

By: Deborah A. Barrett
One of the greatest challenges of chronic pain is finding ways to live with others. Sometimes it seems more comforting to stay home alone, where we can relax, tend to our aches, set our own pace, and control our total environment. This would free us from having to explain, apologize, look odd, or feel guilty about the things we have difficulty contending with. We would no longer impose our tortured bodies on anybody else.
This fantasy, however, has some major flaws! What does it mean to have a life? Usually, living involves a variety of work, social experiences, and travel that remove us from the cozy nest we try to construct and put us in contact with the outside world. What would it really mean to give this up? Without chronic illness, few of us would consider a hermit’s life even marginally appealing. Now, we are pressed to find ways to maintain relationships — precious relationships — without excessive discomfort.
From a handshake with a new colleague to a long trip to visit family, we constantly struggle to reduce physical stress without burdening others or calling undue attention to our illness. These issues are relevant for short interactions with acquaintances as well as daily dealings with those most intimate to us. Finding ways to express our special needs requires careful situation-specific negotiations.
Most people want to be taken care of when they feel awful. People with chronic problems, however, constantly appear needy. This can be taxing to all parties involved. This article grapples with how to tread the line between acting the part of a martyr and the part of a witch — therein lies the challenge.
Just Say No
The first rule of thumb: Eliminate all activities you do not value and that do not require your participation. Even though we may be “sick all the time,” there is nothing wrong with declining invitations for health reasons. A polite, “thanks for the invitation, but I am not feeling up to it” should suffice. People cancel for many reasons. Excessive pain and fatigue are reason enough! We experience substantial pain; why add to it by enduring irritating people or activities? Reduce contact with individuals who drain you rather than add pleasure to your life. Think of yourself as an Brahmin: Reserve your precious energy for only the most important tasks. Prioritize. When possible, eliminate the “I should…” activities for the “I want to…” variety. It is often well worth paying someone to carry out strenuous chores, such as housecleaning and grocery shopping, to free ourselves for more fulfilling activities.
Limit Your Involvement
When you can’t “just say no,” limit the time you spend on burdensome tasks. If you must attend a social or work-related engagement, plan to arrive late and leave early. It is likely you will have a better time, and in most cases, people will not notice.
Come Prepared
For activities we choose to engage in, there are ways to make them less stressful and more enjoyable. Always be a good scout. Fill your car or bag with creature comforts. Extra medication, heat packs, pillows, silk long johns, earplugs and sunglasses can be real life savers. Once you determine for yourself what works, keep a checklist handy when you are preparing to go out. Think about the conditions of the place you are going: What is the temperature? Are the chairs comfortable? How is the lighting? Call ahead to inquire about the environment and whether any special arrangements can be made.
Communicate Clearly
Why is this one so hard? We need to express our needs to others in ways that are simple, direct and polite. Often people who care about us want to help but do not know what to do. However, asking for help is not a neutral act. By asking, we acknowledge weakness and dependence. Therefore physical discomfort is not the only factor in a decision to seek help or special treatment. As I see it, we suffer not only from physical discomfort. We also mourn for the things we can no longer do, and we fear standing out, calling attention to ourselves because we cannot keep up with others.
For these reasons, we need to weigh the importance of seeking assistance. In some circumstances, “passing for normal” might be worth a certain amount of suffering. This depends on such things as our plans for the rest of the day, our closeness to the people we are with, their disposition and familiarity with our condition, and our estimate of the repercussions.
We may prefer the five minutes of pain brought on from shaking hands with one person, for example, to having to explain personal limitations to a stranger. These are the kind of choices only we are in the position to make. While a simple, “I’m sorry, I cannot shake hands today…it’s very nice to meet you,” might work quite well, we may not feel up to it. Long explanations are never needed. A quick explanation such as, “I hurt my hand,” accompanied with a warm smile is unlikely to set interactions off kilter.
Asking for special assistance when something requires only minor alterations from others but greatly affects our well-being is the least difficult. Little requests such as opening jars or carrying small packages across the street can even help others feel good about themselves and their contribution to our comfort.
Difficulties may arise, however, when we desire substantial changes by others, when our wishes are at odds with those of others, or when we appear too aggressive. Asking for a sturdier chair is not difficult, but asking everyone to move tables may be more than is reasonable to ask. We cannot expect a party of twenty to change plans on account of our situation. Likely, there are others in the group with particular needs or preferences. In these situations, it is most important to come as prepared as possible with layers of clothes, earplugs, or whatever increases our comfort. We can excuse ourselves as often as needed to meditate, stretch, run hot water over our hands — whatever helps.
Our requests should take into account our relationship with the people, how familiar they are with our condition, and the length of time the interaction will take. On one extreme, we may decide to play the martyr — to keep quiet and endure great pains so as not to create a scene or disrupt others. However, most people would prefer to make some sacrifices if it means saving you from several days of down time. Put yourself in their place: how would you feel if you could have prevented your friend from having to spend two days in bed recovering? You would feel terrible, especially if something as simple as meeting inside rather than outside could have prevented it.
Although our pain may be quite intense, it is virtually invisible to those around us. No red flag begins to waive when our condition suddenly deteriorates. This makes communication paramount. Because of the intensity of our pain, we may (rightly) feel entitled to preferential treatment. But remember, others do not see our suffering: Few of us consistently use wheelchairs or other assistive devices that elicit sympathetic reactions. The most direct route is a simple explanation that we have a chronic pain condition which is greatly affected by certain factors, followed by a polite request. If your request is granted, make sure to express your appreciation.
The way we ask makes a difference. In the United States, helping others is considered an act of charity, not something expected of us. If we demand special accommodations in a bossy manner (the witch), people will be less enthusiastic about helping. But if we focus instead on how much we appreciate their assistance, others will likely oblige.
Preferences Versus Needs
Many people have strong preferences. With us, however, our “preferences” are often “needs” that, if not met, they cost us dearly. The onset of out-of-control pain or fatigue is frightening and potentially embarrassing, enough to make us wish we stayed home.
Because many aspects of daily interactions create additional difficulties for us, it is completely reasonable to try to influence the environment to suit us better. When it comes to pain, we are no longer contending only with “preferences.” We would probably have shared others’ preferences (for nice long walks, convertibles, etc.) had our physical condition not turned otherwise joyful events into hardships.
But while our condition may be severe, everyone has preferences and people vary in their flexibility. It is unrealistic to assume we alone experience ailments. When asking for help, show respect for others and inquire about how the change may affect them. Many people, for example, suffer from back trouble. On an airplane, you might inquire of a sturdy-looking young man: “Because I suffer from a muscle condition, I cannot lift my bag into the compartment, could you help me?” In most cases, strangers are happy to lend a hand (and our bags are surprisingly light).
The more complicated situation involves those with whom we are closest. For those most intimate, it’s extremely important to understand what makes us feel better or worse. They certainly don’t want us to suffer more! However, these are the people most affected by our suffering. When asking of them, do not dwell on your needs and always express gratitude when someone arranges something for you without your asking.
No doubt close friends will want to help you prevent additional pain. At the same time, even the most sympathetic people may begin to resent numerous constraints on their behavior. It is very important to determine their boundaries. Some people have endless tolerance and patience; while others are easily frustrated by the pertinacity of our condition.
Although we may have to contend with continual pain, it is not fair to use it as a trump card so that our preferences automatically come first. Although the kindness of friends may save us days of pain, we should not make others feel responsible or guilty about our suffering.
Relationships require balance: they are not a one-way street. Remember to keep abreast of the needs of those close to you and try your best to accommodate them. Framing your requests as special favors, rather than expectations, may allay any negative feelings.
Identifying Our Needs
On a practical level, know what you need — the type of chair, lighting, temperature, rest breaks, and noise level — to be most comfortable. This makes it easier both for yourself and for those who want to lend a hand. Although the variety of things that affect us may become intuitive to us, they likely seem an odd assortment of factors to others. Help them by being very clear about what is most difficult and helpful to you. Be simple: “I have a lot of trouble with _________, it would be super if you could ___________. Will this be a problem?”
Overidentification (Too Much Empathy)
Sometimes our loved ones have the most difficulty confronting our disabilities. Our suffering is hardest on those who care most. For them, our difficulties become theirs, sometimes resulting in psychosomatic, empathic reactions. While we may want to share all of our experiences with them, think about the effect this may have. How would you feel if your partner or child were in terrible pain all the time? Just as we crave a break from our symptoms, our family and friends need relief from thinking about them. This does not mean we should be martyrs; your goal should be to create a balance between sharing our trouble and focusing on other things. Be sure to introduce topics unrelated to your medical state. Distraction can be extremely helpful. How much fun can it be to spend time with someone always focused exclusively on their illness? Stockpile interesting stories to share that will take everyone’s mind off your day-to-day problems and focus on more interesting subjects. On the other hand, it is important to keep your family and friends generally informed about your well-being so that they can know what to expect. It may be helpful to devise a system to signify pivotal points where assistance means a lot. Some people feel helpless if they are not actively assisting you: for them, find discrete tasks they are comfortable with. Others, however, feel overburdened by simple requests. People vary in their tolerance for suffering, both for their own and for that of other people.
Just because we may suffer does not mean our partners or family should also. We can reduce their discomfort by trying to prevent situations where our pain gets out of control. Taking good care of ourselves also helps them. Try to focus on the gratifying events of each day. Helping a partner stay in good spirits contributes to a more positive state of mind for us as well.
Denial
Some people close to us may be reluctant to offer help because they may not want to accept we have a “real problem.” Some may be skeptical because there are no “objective” indicators of our illness; the medical community is still somewhat disbelieving. For these people, education is the key. Literature now abounds about many aspects of lupus, from symptoms, to coping strategies, to assistance for families and loved ones. Because of the wide variety of our symptoms and needs, one approach is to admit that our condition is rather bizarre. In making a request, you may say, for example, “I know this seems odd, but the noise from your open car window actually creates tension in my muscles that causes terrible pain.”
Those afraid to admit that we may be ill need reassurance that, although we have a medical problem, we will still be available for them. Children may be afraid to confront their parents’ vulnerability. Feeding their denial, however, forces you to adopt a martyr role. Those who care about you can be reassured that you can control this benign illness with certain procedures with which they can help, if they so desire. This does not mean you will become dependent on them. To the contrary, the more others help with the little things, the more available you will be for them. Remember what the airlines always say before takeoff about putting on the air mask in the event of emergency? “First secure your own mask, then help those around you with theirs.”
In sum, interactions with the outside world can be challenging when you are dealing with chronic pain and fatigue. To preserve energy for the things most important to you, eliminate all superfluous tasks and unpleasant social activity. For those activities we choose to do, always come prepared. When we desire assistance from others, ask politely and clearly, explaining that they are saving us a great deal of pain and we are very grateful. People like to feel appreciated. When this approach is unsuccessful, there are several options. We may decide to rule out future interactions of this sort when possible. We can calculate whether the extra pain is worth it. We are the toughest group around. But playing the martyr entails huge costs and can be done only so much. When it comes to those closest to us, clear communication is crucial. You should make sure others understand your needs. But, at the same time, you should respect their preferences too. Living with someone who is chronically ill is taxing. Make sure to give credit to those who stick by us. We have many thorns in our feet. It’s the greatest act of love to pull one out. By finding ways to communicate with our family, friends and colleagues, we can pull the thorns out together, one by one.

PENCIL-PUSHER – a person who loves to push pencils over tables, desks, floors, etc.

TELEPHONE OPERATOR – doctor who surgically operates on sick telephones. ( I thought of this one when I was around 5 yrs. old, honestly!)

GHOSTWRITER – person (deceased) who writes books

PEA-SHOOTER – someone who shoots at peas. (c’mon, give peas a chance!)

TRAINING BRA – training a bra to do what exactly? Hmmm?

TANK TOP – top part of a tank (DUH!)

BAKING POWDER – talcum powder that you put in the oven at 350 degrees for 30 – 40 mins.

COTTON CANDY – candy you can turn into clothing. Laundering is NOT recommended!

ROSE BOWL PARADE – parade of varieties of bowls, ornamental and not so ornamental, with roses of different colors.

RUBBER STAMP – condom with the words “Rush Delivery” or ‘Fragile” or “Paid in Full”, etc. on the tip. Or maybe even a postage stamp: guaranteed overnight delivery!

Speaking of rubber: RUBBER CEMENT – special type of cement that makes people bounce when walking on it.

RUG BURN – rare type of skin disease that people who lay carpet can get.

ROAD RAGE – extreme aggravation the road get because too many people are driving on its back. (You don’t like it when people walk all over you, do you?)

TERRA BYTE – taking a HUGE bite out of the Earth.

ARROW/SPEAR HEAD – physical deformation. Can be corrected with surgery.

SALTPETER – a statue, made in salt, in the shape of Peter (pick your choice in Peters. I’m going for Peter Pan, myself)

BUNION – genetic hybrid of onions and hamburger buns.

GRAPESHOT – shooting at grapes

WAXING MOON – wax job on buttocks.

That’s all I got for now. Maybe I’ll have more later on.

Rebecca T.

I did my usual routine.  Get up.  Get dressed.  Go fix breakfast.  Mom didn’t really have the time to fix us breakfasts like she did when we were younger.  She had to be at work at 7:30 a.m. ,and we kids were old enough to cook for ourselves.

So me, Mom, Dexter were all in the kitchen doing something.  Dad had to be at work around 6 a.m. and we didn’t see him until he got off work.. So we don’t include him in this tale. Except for that part, anyway.  Mom looked at me with a weird look on her face. She said, “You’re sick, go back to bed!”  I told her I felt fine.  She repeated her orders.  OK, I thought, I’ll do as she asks.   Who am I to complain about spending the day away from school when there is no problem?  NOT ME!!!

I went back into my room.  Put on my nightgown and went to the kitchen for something to eat.  After eating, I went back to my room, lay in bed and waited for everyone to leave.  I kept thinking: “I’m gonna be home all day and I feel fine.  I’m going to play video games all day!  Hurray!”

Shortly thereafter, I started feeling a headache coming on.  Probably the excitement doing that.  Or so I thought.  It got worse quickly.  Mom came in with a thermometer, stuck it in my mouth and waited.  I had a fever.   Oh, joy!  I can’t remember what the temperature was but it had to be over 100 degrees to keep me out of school.  But, I do remember that stupid headache wouldn’t go away for some time, and I felt crappy for most of the day.

Some people have said that it was psychosomatic (i.e. all in my head, a self-fulling prophesy).   I can understand about the ‘feeling crappy’ part.   But, how do you fake or induce a temperature without even trying?  And, remember: I wanted to go to school!  (That right there makes those naysayers stop and think.)
Anyway…

Even now, I keep wondering: How did my mom know I was sick even before I felt it? Stranger things have happened, I’m sure.  But, this one is high on my ’strange things’ list.

Moms must have super-psychic powers or something. (Creepy! But, in a good way)

Rebecca T.