Understand Someone With Chronic Pain

This is by far the BEST article to describe Chronic Pain and how we feel. This is a great tool to share with family and friends to help them better understand: Understand Someone 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 some things that can help you to understand, and help, people who suffer from, often debilitating, chronic pain.

Steps:
1. Remember that being sick doesn't mean that the sufferer is no longer a human being. Often the chronic pain sufferer spends most of their day in considerable pain and exhaustion. If you visit or live with them, they may not seem like much fun to be with, but they are still as aware as you of everything and have needs just like you, but they're more or less stuck inside a body with constant issues over which they have little or no control. Just like you, they still worry about studies, work, family, friends, and most of the time, would like to hear you talk about your interests and happenings, too.

2. Learn the code. Chronic pain sufferers will often talk differently from people free from constant pain. Living with fatigue, irritability, and sadness at their plight, many sufferers learn to bottle up their feelings and use code to cover up the level of pain. There's also a number scale for pain that doctors teach chronic pain patients early in their treatment. By habit, they may describe their pain on a scale of 1 to 10 where 1 is "no pain at all, feel wonderful" and 10 is the worst pain they ever had in their life. Their pain level ten may be outside your experience, it depends on what you've been through in life.

• Don't assume that just because the chronic pain sufferer grits their teeth and says that they're fine that they are. They could very well be covering up, fed up with the lack of understanding in others as to the constancy of their pain.
• Accept that words may be inadequate to describe how the sufferer is truly feeling. Think about a time when you experienced pain, like a broken leg, or a very nasty virus that pounded at your head and every muscle in your body. And multiply that and think of it being constant, every day, without respite. It's hard to find the words for that sort of pain.

3. Recognize the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but chronic pain sufferers have often been sick for years and their pain-filled lives have caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they're in. They don't want to be miserable all the time but they often have to work hard at not being miserable. So, if you're talking to them, and they sound happy, it means they are happy, that's all. It doesn't mean that they're not in a lot of pain, or that they're not extremely tired, or that they're getting better, and so forth.

• Respect that the person who is in pain is trying their best. Avoid saying, "Oh, you're sounding better!" or "But you look so healthy!" They are merely coping; sounding happy and trying to look normal. If you want to comment on that, it's certainly welcomed.
• Look for the signs of pain over the words, so that you can read between the lines. Things that will belie the chipper attitude include restlessness, shifting about, grimacing when they think you're not noticing, sweating, sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts or language

4. Listen. The previous two steps made it clear that chronic pain sufferers can speak in code or make lighter of their pain than is the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it. Use your listening skills to decode what they're hiding or minimizing.

5. Understand and respect the chronic pain sufferer's physical limitations. Being able to stand up for ten minutes doesn't necessarily mean that the sufferer can stand up for twenty minutes, or an hour, or give you a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn't imply that they will be able to do the same today. With a lot of diseases, a person may exhibit obvious signs of immobility, such as paralysis, or total immobilization due to weakness, etc. With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up and each day has to be taken as it comes. In many cases, they don't know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

• Insert "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, to this step, as the curtailment on a sufferer's ability to be responsive applies to everything that you'd expect a person in good health to be able to do. That's what chronic pain does to its sufferers.

6. Leave your "pep talk" mode for your kids and your gym buddies. Realizing that chronic pain is variable, keep in mind that pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it's quite possible (for many, it's common) that one day they're able to walk to the park and back, while the next day they'll have trouble getting to the next room. Therefore, it's vital that you don't fall into the trap of saying: "But you did it before!" or "Oh, come on, I know you can do this!" If you want them to do something, then ask if they can and respect their answer.

• Get over the need to give platitudes about the value of exercising and fresh air. For a chronic pain sufferer, "getting out and doing things" does not make the pain vanish and can often exacerbate the problems. Bear in mind that you don't know what they go through or how they suffer in their own private time. Telling them that they need to exercise, or do some things to "get their mind off of it", may frustrate them to tears, and is not correct advice, especially if you're not medically trained and haven't got a clue. If they were capable of doing some things any or all of the time, they would.
• Remember that chronic pain sufferers are constantly working with doctors and striving to improve and do the right things for their illness. 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; not to mention the recovery time, which can be intense. You can't always read it on their face or in their 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.

7. Never use throwaway lines. Assuming you know best by making such statements as "Ah well, that's life, you'll just have to deal with it", or "You'll get over it eventually. Until then, you'll just have to do your best", or worst of all, "Well, you look well enough", etc., are lines that might make you feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope. Psychologist Mark Grant suggests that you throw lifelines rather than throwaway lines, by saying something like: "So how have you survived?"

• Admit it when you don't have answers. Don't paper over your ignorance with platitudes or bold allegations not based on fact. There is no harm in saying "I don't know" and then offering to find things out.

 8. Check your own patience. If you're impatient and want them to "just get on with it", you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.

• A chronic pain sufferer 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.
• Be very understanding if the chronic pain sufferer says they have to sit down, lie down, stay in bed, or take these pills right now. It probably means that they do have no choice but to do it right now, and it can't be put off or forgotten just because they happen to be somewhere, or they're right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

9. Be sensitive when suggesting medicines or alternative treatments. Prescription drugs, over-the-counter medicines and alternative therapies can have side effects and unintended consequences. Some may not appreciate suggestions, and it's not because they don't want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven't worked carry the emotional pain of failure, which in and of itself can make the person feel even lower. Of course, if there were something that cured, or even helped people with a particular form of chronic pain, then they should be made aware of it. There is worldwide networking (both on and off the Internet) between people with chronic pain. Those can be good resources. Be sensitive in how you bring it up.

• On the other hand, never be afraid to ask them about how satisfied they are with their treatment. Mark Grant says that it is important to ask helpful questions about whether the chronic sufferer thinks their treatment is satisfactory or if they think their pain is bearable. He suggests that people rarely ask these open-ended "helpful questions" that would help the chronic sufferer to open up and really talk.

10. Don't be put off if the chronic pain sufferer seems touchy. If that's the appearance, it's probably because they are. It's not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard 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, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.

11. Be helpful. The chronic pain sufferer depends a great deal on people who are not sick to support them at home or visit them when they're too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. You can be their link to the "normalcy" of life. You can help them keep in touch with the parts of life that they miss and desperately want to undertake again.

12. Balance your carer responsibilities. If you are living with a chronic pain sufferer or supporting such a person on a regular basis, you need to maintain balance in your life. If you don't take care of your own needs, health, and work-life balance, being around the chronic pain sufferer can bring you down even though you're probably trying hard not to be. Avoid suffering from carer burn-out by getting other people to help, taking time out, and curtailing your guilt trips. Care for this person as much as you're able but also care for yourself.

The CMT Rollercoaster

I have continued to be M.I.A. from my blog because the last couple of months have been a struggle: physically and emotionally. I didn't really want to write a sob story or just complain so I thought it was best to stay away for a while.

Since I really crashed at the end of September, I have actually been struggling to get back to normal and can't seem to get there. I have been on this new work schedule for 2 months and I can't seem to feel less exhausted. We paused a lot of the home renovation projects so we could get some rest. I can't remember the last time I cooked a meal...unfortunately none of these things have helped much. It has been a slow recovery process and I've actually started to use my wheelchair on a regular basis when we go to any big stores like Home Depot or Bed Bath & Beyond. The pain reached an all-time high, which led to many crying/sobbing sessions, much time spent thinking about life and pondering "What is my future going to be like?" And as a person with a progressive degenerative neuropathy, it's NEVER good to go down that path.

We actually took a 2 week vacation in Brazil where my entire family was reunited for the first time in over 15 years. John and I were very excited to get away and get some much needed rest. The trip, like CMT, had many ups and downs. The absolute BEST thing about our vacation was that John proposed to me in front of my entire family. It was such an exciting moment and so special that we got to share it with my sisters and all the relatives there. I have been blessed with a wonderful family and a very supportive and loving man who will soon be my husband!!!!

The downside was that even though my CMT decided to take a break, I had a couple of different ailments that kept me in bed for most of the trip, sleeping all day and awake all night, and unable to spend quality time with family and siblings I hadn't seen in over 2 years!!!

I am so thankful for having a religion, for having faith, for believing in a higher power, but I definitely reached a point where I was just exhausted emotionally. Tired of bearing the brunt of the pain, wanting just a little break, desperate for some normalcy...and for the first time in my life I became depressed. I know many CMT patients struggle with depression because it's not easy dealing with non-stop chronic pain, but I had never experienced this myself. While I recognized what was going on with me, I couldn't get myself out of this "funk."

I think one of the main reasons I've been down is that now that we're getting married, we own our home, the next logical step is to have babies. I am so lost. I don't know what to do. I know that I want a family but I am scared. I'm scared about who's going to care for the baby when I am at my worst, I am scared about pregnancy, what if my symptoms get worse? And what if I pass on CMT to our baby? I know life will work itself out eventually but not knowing which way to go has been a bit upsetting for me. John is okay with whatever decision I make, he's happy as a two-some but he's so great with children that I want our child, I want to have a family, I want the child laughter in our home...but I watch all my "healthy" friends struggling with the craziness of being a parent, I wonder how I'll be able to do it with this tired body of mine... I know many of my CMT buddies have managed it and that's always positive reinforcement, but I still wonder...

To make a long story short, I think I'm slowly getting better but I am seeking help. John and I talked about many possible treatments and we decided that it would be best for me to go back to physical therapy, which will be starting tomorrow. I have also been stretching at home every night and I feel like it has made a difference for the better. I have NEVER been able to touch my toes and look at me now!!!!

 

I will also be starting yoga this weekend...a great friend from church has volunteered to come to my house and help design a program that will be helpful for me that won't be too tiring. She's going to teach me breathing techniques and exercises we can do sitting or laying down. I'm also in search of a new primary care physician so I can have a physical done and a new neurologist at the Yale Medical Center. Wish me luck!!!

Even though I have CMT to deal with, it seems that God sent a bunch of angels to watch over me...from friends who volunteer to help here and there, to a wonderful mom who comes over and fills our freezer with yummy food, to a wonderful fiance who knows what to say at the right time and helps me so much around the house, to fantastic dad who is there for us to help with whatever we need, to amazing sisters who are there to hear me out, to dish out advice and sometimes just be a shoulder to cry on (even if long distance).

I know I will find the strength to get back to normal...to be my happy self again with hopefully a little less pain. Life is full of happy moments and sad moments, to those with a medical condition or not. I am tired of being sad and of thinking too much. 

2011 has been an amazing year for us, but also a very difficult one for many reasons. I am really hoping that 2012 has a lot of exciting things in store for us.