Can you imagine pain so bad unbearable so constant debilitating and out of your own control that you find yourself comforted by the ice cold blade across your skin causing yourself harm in order to feel a sense of control and to take your mind off the pain of your illness and put on something else caused by YOU.feeling so alone and scared that you think maybe your better off dead! Pain makes you do crazy things and think crazy things you dont no what it feels like to feel normal.I have nothing in common with healthy people who complain about a headache
- Open Letter from a Person with 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 work, 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 doctors 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 I’m 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, as is the case with herbal remedies. 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, the cooking or the 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 asked a lot from you, and I do thank you for listening. It really does mean a lot.
Chronic pain isn’t just a nag. It can make day-to-day life downright miserable.
It’s hard to focus on anything when you’re in pain. New research tells us why.
A recent study, published in the Journal of Neuroscience, sheds some light on exactly what goes on in the brain while folks are in constant pain …
Can pain change the brain? If so, can the changes be reversed?
For this study, researchers recruited eighteen adult patients with chronic low back pain.
Before they were given treatment for their pain, each patient was subject to a functional MRI (fMRI).
A control group of sixteen healthy, pain-free participants was also given an fMRI.
Here’s what happened:
The first thing researchers noticed was that a prominent region in the frontal cortex – called the dorsolateral prefrontal cortex (DLPFC) – was thinner in the lower back pain group than that of the pain-free group.
Next, during the brain scan, participants were asked to perform a mental task. They had to pick out a visual target from other characters.
Both groups performed the task equally well. The major difference was that those in pain had several more brain regions that were activated, including the DLPFC.
Once the brain scan data was collected, the patients received treatment for their pain.
Six Months Later
Post-treatment, the majority of patients reported being pain free.
Researchers then gave each one a new fMRI to see what changes occurred in the brain, if any.
It turns out that the thickness of the DLPFC increased in EVERY patient who reported an improvement in his or her pain.
Then, when performing the same mental task from the first fMRI, these former pain patients showed a significant decrease in brain activation than they did while in pain.
In fact, their brain scans looked like those of the control group.
New Horizons in Pain Management?
I found this study to be very interesting for two reasons…
1. It shows us that healing the body also heals the mind (quite literally).
2. It begs the question… could a focus on changing the mind first (instead of the body through invasive surgery or drugs) eventually become the preferred method of treatment?
More research needs to be done, to be sure. I just hope it gets done quickly.
Chronic pain sufferers may be the most under serviced…and downright mistreated people being herded through the health care systems of the world.
And despite all the cutting-edge research being done, (for example, we now know that emotions have a large effect on how intensely you feel pain. As well, it’s proven that stress and anxiety can change the structure of your brain for the worse) it seems like the day where doctors will turn to the mind as the first and preferred option for pain management is still far away.
Its really sad the world we live in when its comes to Chronic Illness. We see a pretty young girl Her hair is combed,nails done,very little makeup on,Clothes match and she looks well put together.Little do you know She could barely get out of bed in the morning The pain was so intense she welcomes her day with tears.It takes all her strength to lift her hair brush and make full brush motions and she stands there watching the hair fall from her scalp praying its a little less than Yesterday and will only comb it once in fear of total baldness.She goes through her closet clenching her teeth trying to balance in the pain vibrating down every limb.Its not so easy even though we make it look so…
Stand facing the endless outfits we spend money on but barely wear try on a few sexy dresses confronted by the Endo Belly and quickly throw that to the floor just to grab your nearest sweat pants and try desperately to find something that matches and makes you feel a bit better in your tired eyes.
Put make up on though it is met by floods of tears from the very action of trying to look pretty or sexy depends on whos looking. Its so time consuming and exhausting to fix something that feels ugly and worn wrinkled and aged by the years of chronic pain.
Trying to look our best but how when you look pretty or societies Aimed perfect then your treated different your looked at as not sick as normal even super human. Everyone overlooks the make up stains on your cheeks,blood shot eyes from lack of sleep,or the hair in a messy ponytail when your pretty they dont see illness they see opportunity. Opportunity to make you work harder and alone,faster,more efficient ,last longer and dont see sick see only what they can use you for. If I walk a little bit stronger faster head held high they think oh Shes faking her illness,what illness,wheres her pain she looks pretty good to me? They dont see a sick frail malnutritioned human being barely making it through her day.
People will notice when you walk with help from a walker or cane when you lean to the side or start crawling on your hands and knees unable to stand,They notice when you scream in pain hold your water bottle and not move,They notice when you finally end up in the ER cause you pushed yourself and your having a flair up.They notice when you can no longer make them happy or make everything about them and you start to shut down.
When we have learned to fake being healthy just to fit in, not feel pity ,Looked down upon made fun off its hard to break that cycle of being so hard on yourself and finding perfection.You try to be sooo nice and try to hold in that your feeling like death.You dont want to burden others so you hide away and push the illness to almost extinction in there eyes.You know the pain and illness disease is all still there but you pretend to the outside world Your healthy and can do anything. You drown in your sorrow and the world is holding your head under water.You ignore as much as you can play loud music to distract you from the stabbing knife like pain throughout your body.You learn to meditate bite your lip and get into a state of fake bliss.Only to not inconvenience others around you ohh we have to take extra care of sick girl !
We hide we are ok very well its an art form you look at me and say wow she looks happy smiling walking around and being quite active. What we do is jump to conclusions and judge the book by the cover and her cover is covered in makeup to hide the dark circles.The clothes to cover her bruises,cuts Her wild style to distract from the fact she just wants to hide in a hole and die.
Its not easy trying to please her boyfriend or the people she loves and not disappoint them by cancelling plans or not wanting to do certain things.Being sick keeps us house bond and when we venture into the world we take everything but the kitchen sink for our comfort or emergencies.I hate feeling that thing when I am out with my boyfriend having a unpretty day which in my case is nails and toes manicured and painted, hair colored in a clip maybe foundation and a light lipstick with a nice fitting summer dress thats my dress down days where there far and few inbetween He makes me feel like that average girlfriend no prize just his sidekick friend or I am just there,No compliments or stares or pictures being offered to take as he does when I take 3 hours to get ready to go out on other days.He makes me feel washed out and down right ugly.You dont catch him looking at other girls he is too busy pleasing you all over you.Not on dress down days he walks ahead of you and forgets your there. He forgets your sick when you force yourself to walk his speed in the mall and walk without a walker,When you see no disability with your eyes your mind must forget ohhhhhh yesss she has ENdometriosis,Chronic Pelvic pain,Herniated disks x3 suffers from extreme fatigue,bloat and heaviness with each meal not to mention gas. Insomnia,migraines,depression,anxiety,stress brought on by pain,confusion from the tunnel of spinning symptoms she goes through in one hr every hr of the day.Horrible debilitating cramps and pain throughout each body part. Not one part of her perfection doesn’t hurt,bloat,swell,burn,itch,stab,cut,tingle,numb,hot,cold,clammy,pinch,stick,pull apart,ripe,tear,crumble to the ground. Yet she has to be super human so that the world doesn’t fall apart she needs to be strong to hold her family up be the back bone though hers his failing her own body.She rages a war inside herself to please you not worry or stress you its her against the world.SHe stands tall and faces the day so you can feel safe and like a good support because you asked how she feels as she runs around the house cleaning balancing a hundred chores. You offer to take her purse while shes walking fast to keep up with the world and peoples demands it makes you feel useful when you hold her purse all day but beg her for sex later that night.You feel useful helping her do chores but want her to look sexy doing them !
Its just exhausting trying to almost prove your sick cause you have gotten so good at hiding it,Its so easy for people to forget she doesn’t sleep when the rest of the world does and nothing she does is easy.Even the smallest thing you healthy people take for granted like a shower,walking,getting up without pain, you forget is so defeating for us.You ask us how was your day like you expect to hear it was wonderful noooo I just held my breathe all day hoping you wouldn’t notice ….You Didnt you never do.
You get all kinds of attention after leaving your doctors office after the nurse says you look great and you just want to slap her but that would take too many extra spoons.
Your support system feels bad ok ok she is at a doctor have to remember its bad 15 min later in the parking lot there opening there car door and leaving you in there dust.
Its sad when you have a pain free day and push yourself people think yaaaa shes cured lol if only I had a miracle cure to share with all my lovely warriors.They think ok there guard is down dont have to watch out for you can forget your sick for the day and watch you sabotage yourself doing way to much with the following next 3 to 5 days in bed
If I was see through then you would see the hell I live in daily!
You dont see me you never have