Letter to People without Chronic Pain
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours, too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you – people who are not sick. I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
TIPS FOR DEALING WITH PEOPLE IN PAIN
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.
Multiple Chemical Sensitivities (MCS) is a
medical condition characterized by debilitating
chemical sensitivities. People who are chemically
sensitive are made sick by exposures to
chemicals found in many common products such
as pesticides, perfumes, tobacco smoke, new
carpets, air “fresheners,” new paint and building
materials, and many cleaning and laundry
products. Most of these chemicals will make
everyone sick at high levels, but for chemically
sensitive people exposures to even small
amounts of these substances can cause
symptoms. Some chemically sensitive people are
only mildly affected while others have the more
severe form of the illness called MCS.
Symptoms experienced by people with MCS
range from mild to life-threatening and include
headache, trouble concentrating, nausea,
diarrhea, fatigue, muscle and joint pain,
dizziness, difficulty breathing, irregular heart
beat, and seizures. MCS symptoms in children
include red cheeks and ears, dark circles under
the eyes, hyperactivity, and behavior or learning
problems. After an exposure, symptoms may
occur immediately or be delayed for up to a few
days. Reactions may last from a few seconds to
weeks or months. People with MCS often react to
a variety of foods, drugs, molds, and pollen as
well as chemicals.
Creating a Healthier Environment
Reducing exposures to chemicals improves the
health of those with MCS. Better air quality also
helps promote the health of everyone. The
following are ways to create a healthier
· Avoid pesticides, use least toxic integrated
pest management (IPM)
· Avoid newly built or remodeled buildings, or
build with less toxic materials
· Avoid new paint and solvent-based stains and
· Avoid new carpets
· Avoid gasoline, solvent, dry-cleaning, and tar
· Avoid tobacco smoke and vehicle exhaust
· Use least toxic, natural, and unscented
cleaning, laundry, and sanitizing products
· Avoid perfume, cologne, and scented
personal care products
· Avoid air “freshener” sprays, incense, and
· Use electric utilities or radiant heat
· Open windows, ventilate buildings with clean
fresh air and/or use portable room air filters
Multiple Chemical Sensitivity (MCS) is basically a subset of Environmental Illness (EI), which is caused by living in a toxic world. The chemicals that were synthesized after World War II (including, pesticides, synthetic fragrances, cleaning products, detergents, etc.) are mostly “petro-chemicals” (petroleum based) and are quite toxic to humans. There have been virtually no studies done on the majority of these chemicals to see how they affect humans – the industry just placed the chemicals in the environment with the assumption that they are “safe, till proven toxic”, instead of the other way around. One of the biggest offenders is PERFUME and other scented products. Did you know that many of the ingredients in your perfume are the exact same ingredients found in GASOLINE??!! I didn’t either! The scary thing is that the perfume industry is NOT REGULATED at all – they can put any number of chemicals in fragrance without revealing what those chemicals are – or how they affect humans. We humans are all participating in a giant “lab experiment” against our knowledge and against our will, and it’s making some of us VERY sick.
Those of us who are becoming chronically ill from these chemicals are similar to the “canaries in the coal mine”. Coal miners would take a canary into the mines with them to warn them when the air became toxic. They knew that when the canary stopped singing or died, it was time to get out before it affected them as well. We “human canaries” are here to warn the rest of you that, unless you start making changes and avoid as many toxic chemicals as possible, you too may become very sick. Non toxic living is actually much “simpler” and cheaper!
Don’t be fooled, these chemicals are affecting ALL of us in some way or another. Think about the last time you got a headache for no apparent reason. Could it be possible that someone had recently sprayed perfume or pesticides near you without you knowing it? Had you recently used scented laundry detergent or Clorox to clean with? Do you get headaches or feel nauseous from being around people wearing perfume or cologne? Do you feel you need to hold your breath when you go down the detergent aisle at the grocery store? All these things are your body’s way of telling you something is wrong with the air you’re breathing. While an MBA in health care may help you understand the whys and wherefores of the medical issues it doesn’t take a masters degree to listen to your body and know that things are not right.
It’s like playing “Russian Roulette” – you never know how long your immune system can hold out before breaking down. Some people may never reach the point of “chronic illness” that I did – but most people are being affected, possibly without realizing it. Cancer has increased dramatically since World War II (after all the chemicals came out). Attention Deficit Disorder is on the rise (more and more of our children are being put on toxic, brain-altering drugs like Ritalin when simply cleaning up their environment could solve their problems). Chronic Fatigue Syndrome, Alzheimer’s Disease, Allergies, Asthma, Lupus, Fibromyalgia, and Multiple Sclerosis are also increasing. All these illnesses could very well have a chemical connection to their cause or, at the very least, these patients would benefit from using less-toxic products. Pretty much any “immune system” disorder could be helped by a cleaner environment and by using safer products.
The products we use on our skin are absorbed directly into the bloodstream (the reason why nitroglycerine, nicotine, and hormone patches work). The chemicals we breathe (such as perfumes, formaldehyde, pesticides, etc.) all go straight to our brains and can cause low-level to severe damage – similar to how someone can snort cocaine or glue to get a “high”. Start reading labels – check for petro-chemicals, formaldehyde, and fragrance, and avoid them as much as possible. A clue that an ingredient may be a petro-chemical is the “prop” prefix. A clue that an ingredient releases formaldehyde is “Quaternium”. Be careful about products labeled “fragrance free” or “unscented”. Don’t trust them! Read the label and be sure they don’t list “fragrance” or “masking fragrance”. Don’t put anything on your skin you’d be afraid to eat, because the end result is the same!
Before I got sick, I had no clue that I was slowly being “poisoned” by products that I assumed were “safe” since they were on the market! If this could happen to me – YOU COULD BE NEXT.
AND SOOOOOOOOOOOOOOOOOOOOOOOOOOOOO MUCH MORE DESCRIBES LIVING WITH MCS!!!!!!!!!!