My Constant Daily Companion

By Mia Maysack, PNN Columnist

I've got a companion everywhere I go. The wants and needs of this little bugger consistently require that I prioritize it before myself. It tests my boundaries, my patience, as well as my sanity.

I cannot eat, sleep or even use the restroom uninterrupted. This results in a consistent flow of tailored accommodations to make life easier for all involved. Temper tantrums are not only a daily occurrence, but a humble reminder that I am operating on a clock outside of my control.

I'm not discussing a child. I am referring to my chronic illness.

Migraines and my other ailments wake me up throughout the night, demanding attention. We all know how this works. No one gets any rest until the situation settles down. Pain is a constant companion who must be catered to.

Today, for example, I woke up to what felt like a pitchfork making its way through my cheek and out through my left eyeball.  Grabbing my face out of reflex -- as if somehow that'll ease the discomfort -- I rocked myself back and forth until the severity lessened.

bigstock-Headache-migraine-people--Doc-79378753.jpg

My entire body still feels the aftershock of that attack, but it's only the first of many that'll transpire throughout the day. I know enough to recognize this as a warning.  My brain injury is now triggered, turning an everyday 5/6 on the migraine scale into a solid 8/9.

The impact on my physical body is severe due to the heightened sensitivity of my nerves. Getting up from a sitting position gets harder by the day. At times it is not possible for me to stand up straight or navigate stairs. Sometimes I can barely walk.

There is overwhelming nausea to the point that even breathing seems to aggravate it, so no food or drink remains inside. This causes further complications, as malnourishment and dehydration only worsen things. The dizziness gets so severe it hinders my eyesight.

Despite the fact I am on no drugs whatsoever, I feel “out of it” to the point that all I can do is write because I'm unable to verbally speak.  

If you're so sick, how can you type?  Lowest brightness. Special glasses. I document this so the world can understand and because I am currently on bed rest.

It doesn't take long for the darkness to creep in, with special guests anxiety, grief, stress and panic. Despite how much it hurts, keeping my mind busy is imperative. So I write.  

What I'd really love to do is rest, but it hurts to close my eyes. And even though quality sleep is what my body needs most, it further heightens my head pain.  In other words, the self-care that has been my saving grace actually worsens things.

I'm not a violent person, but if someone suggested a Tylenol or something like it, I'd have to fight the urge to use my last ounce of energy to punch them in the face.

No work was done today, meetings were cancelled, my dog didn't get a walk and I am barricaded in a blacked-out room. Another rescheduled dinner date with the girls, unable to answer phone calls or messages, couldn't run errands or get any chores done. The world continues to spin without me.

Missing out on life and feeling the weight of disappoint is a crippling side effect of all these symptoms. With broken hearts we mourn the lives we've lived and who we once were.

I have always been the one to take care of everybody -- the nanny, teacher, nurse. Now I struggle just to keep up with what's going on internally. As if that’s not difficult enough, we have to fight to be taken seriously or even believed. That is unacceptable.

img1539183317715.jpg

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Scoring Goals With Your Goals

By Barby Ingle, PNN Columnist

When it comes to living with chronic pain and illness, the way we motivate ourselves and achieve goals can change. I know it did for me.

There are two types of goals: mastery and performance. Before I had a chronic illness, I was performance oriented. I was wrapped up in demonstrating my competence and abilities, especially when it came to my job. Suddenly that was not possible anymore. I had to adapt, change and learn how to master by goals if I was going to manage the chronic pain portion of my life. That’s where I am now.

Knowing someone’s goals helps us understand what motivates them and predict if there is a likelihood of achieving and sustaining their goals. It can also help us decide if we have a similar goal that can be worked on together, if we should partner with them or if we should move on to someone else.

In a doctor-patient relationship, if a doctor can’t help you achieve your goals with the tools and resources they have to offer, then it’s probably time to find a new doctor.

Performance oriented goals (also known as ego goals) are characterized by the belief that success is the result of superior ability. Performance oriented individuals seek to outperform others and demonstrate their ability.

When patients are working to complete this type of goal, they’re often concerned about how they will be judged relative to others. An example of this would be a patient who wants their doctor to love them the most and call them their “best” patient. They are competing against other patients in a game with only one winner.

target-1955257_640.jpg

I believe mastery goals will prove to be more effective in the long run. Mastery goals are also known as learning goals. They are goals where the person is focused on learning, mastering tasks, self-improvement and developing new skills. An example of a master-oriented goal would be organizing your medical records.

When a chronic pain patient masters a skill at their own pace and level – not competing with others --- it increases their resilience, quest for knowledge and enjoyment of life. One of my favorite quotes is “Winners don’t always win, but they never give up.” When we become mastery goal setters, we can accomplish more without societal pressures and take our time knowing that we will make mistakes and its okay.

Setting a mastery goal starts with taking a moment to think about what you want to accomplish over the next few weeks or months. Is there something you have been wanting to try? Something that will take you longer than others who are healthier? Are you up for that challenge?

Ask yourself what you want to learn. Then make it a learning goal. You do this by being specific. Don’t just say, “I want to organize my medical records.” Do you want your records in notebooks, on a computer, a USB, or in your patient portals? Do you want to update or correct your records” and send copies to your doctors? Do you want to start from today and only do new records or go back and organize everything?

Remember, your goal should be achievable in a few weeks or months. Otherwise you are setting yourself up for failure. Decide on a goal that is attainable. What past skills do you have that can help you out? Think through your goal to make sure it is realistic. Are you able to work on multiple goals at the same time or do you need to break this one down further to make it doable? Think about your current abilities and how they will help you achieve your goal.

How will you measure your success? Decide at the start how you will measure your progress. Try to organize five pages of medical records a day or do whatever you can. On some days you’ll accomplish more than others.

Ready to “goal” for it? Share in the comment section below what your goal will be in 2019. Sharing your goal can help you stay motivated. I wish each of you well on your goals and success in accomplishing the activities you set out to accomplish!  

Barby Ingle.jpg

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

I Thank God for Opioid Medication

By Carmen Littizzio, Guest Columnist

I was born with a rare genetic defect called Arnold Chiari Syndrome, which blocks the flow of cerebral fluid and causes pressure to build in my brain. I had brain surgery to treat it in 1999, when I was 44 years old.  

During this surgery they cut off a portion of the skull in the back of my head to make more space for cerebral fluid to flow. Lack of fluid in the brain and spinal cord causes intense pain for me from the waist down.  At times I’m not able to walk and have painful electrical sensations that are torturous.

Nineteen years after the surgery, I still suffer from high pressure headaches, chronic leg pain, thigh and buttock pain, and other symptoms. The high cerebral pressure has also caused other problems, such as retinal detachment in both eyes, vomiting, vertigo and vision issues. 

In 2008, when I was 53, I developed a crowding in my spinal cord the same as I had in the brain and had to have a spinal cord decompression. They put a titanium plate with four screws into my back to hold it all together.

This operation was so intense that for days after the surgery, I just wanted to die. It was a living hell.

I survived with the help of morphine, but eventually went back to my old pain medication, which consisted of Neurontin, Topamax, Elavil and Diamox -- all in very high doses.

CARMEN LITTIZZIO

CARMEN LITTIZZIO

In 2009, my body started shutting down because of those meds and I was unable to urinate. I had a permanent catheter put in and all those medications were stopped. I started taking Percocet for pain. After 4 months, I began urinating again and never wanted to go back to those other meds. 

I was told of the dangers of long term opioid use, but decided to risk it for some quality of life. My other choice was to sit in a wheelchair for the rest of my life, be able to do nothing, and still die young because of being so sedentary. 

I am now 63 and next year it will be 20 years since the brain surgery. I take a time released OxyContin in the morning and evening, and oxycodone for breakthrough pain and the headaches. 

I am entering my senior years, but still walking on my own and enjoying my children and 5 grandchildren. I don't know how much longer I will live, but I feel like I’ve won the war. What war? The war for quality of life. I thank God for opioid medication. I have never been high or abused my medications. 

I feel very bad for those that abuse narcotics or overdose.  But why should I pay the price for their inability to use self-control? We don't take alcohol off the market because we have alcoholics and drunk driving.

There are many people like me that have chronic pain and illness, and we are paying the price for those who abuse. It’s not right and not fair that we should be made to stop living because of their issues.  Nobody has the right to choose for me. 

bigstock-Tell-Us-Your-Story-card-with-c-78557009.jpg

Carmen Littizzio lives in Maine.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Grieving a Former Life

By Pamela Jessen, Guest Columnist

Once upon a time, there was a woman named Pamela. She was a strong, vibrant woman who worked as an operations administrative assistant for a company called FGL Sports, which operated a chain of sporting goods stores in Canada. Pamela took care of the administrative needs of the director and senior management team. 

Unknown to these people, Pamela lived with fibromyalgia and osteoarthritis. She did her job so well that she was able to keep these illnesses hidden for a long time, but they gradually started to get in the way of her work. Pamela eventually had to leave her job and go on permanent disability.

That was really devastating for Pamela because work was her life! She loved everything she did, from organizing training meetings and corporate functions to keeping her boss’s life on track. 

Once she was no longer working, a lot of negative feelings started to dwell up inside Pamela. She started feeling depressed, angry, sad and lonely. These were natural responses to having a chronic illness, but it was also frustrating to have to deal with them on top of not actually having a job to go to.

Pamela felt herself getting more depressed and sometimes it was easier to just stay in bed and sleep rather than get up and face life. She knew this wasn't good, but there really wasn't any reason to get up anymore.

640px-Sad_Woman.jpg

Well, of course, that woman was me. It was a difficult phase of my life, as work had always been my passion. I was an administrative specialist in retail support for most of my career and I loved what I did. Every day was a treat. Unfortunately, my body just couldn’t keep up with me. The pain and exhaustion that goes along with fibromyalgia and osteoarthritis took over my body and I had to surrender to it. There simply was no other choice. 

After some time, I took a chronic pain management course and started feeling better mentally. This course explored the various stages of grief we go through when you experience a job loss because of illness and disability, and I realized that was exactly what had happened to me. I had been grieving. 

There are five stages of grief: denial, anger, bargaining, depression and acceptance. The instructor asked us what we had to give up in our lives because of chronic illness. He had us make a list and to really think about what was on that list. Mine, of course, was my job and the volunteering that I loved to do. 

I knew going back to work wasn't going to happen again, but I was sure there must be a way I could use my volunteer skills on my terms. Then one day I noticed an advertisement in my local paper for an organization called Patient Voices Network in British Columbia and it looked perfect for me. The group was looking for volunteers who could be the voice of the patient when health care providers needed that voice in their engagements. I attended an orientation session and before I knew it, was attending my first assignment! I loved it from the start and have been an active participant ever since. 

Currently, I am the co-chair of the Oversight & Advisory Committee for Patient Voices Network. I also sit on the Clinical Resources Committee for the BC Emergency Physicians Network. 

It’s amazing how getting involved again in something you love can bring the grieving process full circle to acceptance. I realized that I had given up a lot because of fibromyalgia and osteoarthritis. But by accepting my new limitations, I actually gained a whole lot more.

0.jpg

Pamela Jessen lives in Langford, British Columbia. She has a blog called There Is Always Hope, where she writes about living with invisible illness.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Stay Engaged Socially If You Are Chronically Ill

By Barby Ingle, Columnist  

It is so important to stay active with your social life when you are living with chronic pain or a disabling chronic condition. It is so easy to isolate ourselves, which can lead to an increase in anxiety, depression and frustration.

Work at not isolating yourself from friends and family. Here are a few ideas that my husband/caregiver and I use:

For Patients:

  • If prayer is helpful, keep doing it
  • Keep exercising (or start)
  • Look for support wherever you can find it
  • Maintain a healthy lifestyle
  • Socialize as much as possible
  • Take in good nutrition
  • Remember your caregivers are going through similar challenges

For Caregivers:

  • If a patient is grouchy or depressed, don’t see it as an attack on you but as a reflection of their pain
  • Learn as much as you can about the patient’s condition and the available medical options
  • Remember the patient is not doing this on purpose and is going through many challenges
  • Try not to take a patient’s anti-social behavior personally
  • Try to avoid being either too babying or too harsh toward a patient
  • A patient may feel less guilty if the burden does not always fall only on you. Try to find others to help with their care.

For Both of You:

  • Discuss options with a loved one when they are ready to talk about them.
  • Join or form a support group. This may be other family members or friends. This will allow you to take a break.

I believe that human connection is so important. When we connect with others and when we have support, we cope better, our pain levels don’t flair as often, and many other health benefits kick in.

We are meant to interact and be a part of society.

I have worked with many chronic pain patients over the years who isolated themselves. Either they or their caregiver came to me asking, “How do I get past this depression?” or “How do I get past all I have lost?”

One woman, who became a good friend over the last 10 years, was injured in her early years of life. She didn’t realize she was isolating herself and that she had stopped maturing psychologically or connecting with others.

Slowly and over time, she changed her patterns of social interaction, concentrated on her feelings, and practiced better daily living (posture, nutrition, stopped smoking). I encouraged her and her caregivers to be more social and pay more attention their feelings. She is now a social butterfly, both online and offline! 

I am also aware that social media or negative online support groups can be very draining when you don’t put up limitations and pay attention to your energy levels.

Find a good balance in life whether you are the patient or their caregiver. Remember you too can have a more meaningful social life that can make a difference for you and everyone around you. 

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network. 

7 Tips for Peace and Calm in the Busy Holiday Season

By Ellen Lenox Smith, Columnist

When the holidays are upon us, we tend to go into overload. Our minds are filled with all the things that have to get done. Maybe it’s presents to buy or make, meals to plan, company to prepare for, or packing for travel away from home.

We get so busy wrapping, cooking, cleaning and planning that, before you know it, your mind is spinning. If we aren’t careful, we get so wound up and tired that we can easily slip away from enjoying and experiencing the meaning these times with family and friends should have for us.

For those of us living with chronic pain and illness, it can also unintentionally cause a setback with our health. Life is difficult enough already without adding holiday stress to it.

Take the time to protect your health and learn to make it a priority among all the other things you need to take care of.

Here are seven tips to put peace and calm back into your life, while still enjoying the holiday season:

1)  Do your best to stick to your normal routine. Be honest with yourself and your body. If you are too tired or have too much pain, do what is best for you. There is nothing wrong with “not feeling up to it.” Give yourself permission to cut yourself that break.

2)  If you have chronic pain or illness, share with people that really want to know the truth. Many friends and family really don’t understand what you are coping with, possibly due to distance. Maybe you have had little contact, they don’t know how to approach what is happening with your life, or maybe they have chosen to ignore and not support you. 

It is a painful thing to experience when family and friends slip away. But in time, you will find others living with pain and illness that are more understanding and compassionate. Try to find that network, and learn how to live with and someday forgive those that don’t know how to be around the “new you.”  It will someday be their regret for their lack of compassion. Remember, there are many people out there that could use your friendship. Consider reaching out to others in need.

3)  Attempt to simplify your life to prevent the exhaustion many of us experience. One way our family has accomplished this is to no longer buy presents for each family member. A few years ago, we began selecting the name of one person and buying a present for them and no one else, except the children in the family. This had to be the most relaxing decision added to the holiday! The pressure is gone, and we now get to gather and just enjoy being together. 

This year, we have decided to take this idea one step further. We're donating the money that we would have spent on that one person to some person or cause that we want to help support.  We will share, when we all gather together, what we chose to do with our donation. We are all looking forward to hearing each others' choices. 

4)  Being with family and friends can be both wonderful and stressful. Try to make sure the conversations stay on a positive track.  When the topic appears to be getting into testy waters, try to sway the conversation away from negative topics. 

We have all had to calm down and regroup from the stress of the election, so try to steer away from anymore negative talk, blame and judgement. The Today Show even suggested that if you are the host, to set the rules and explain that this is a calm gathering. Consider designating a separate room if someone needs to talk politics. 

We have all experienced finding out that people we love and respect did not vote as we did. It can be a trial to hold onto these relationships, when there are dramatic differences of opinion we didn’t necessarily expect to find out about. We need to accept those differences and still appreciate the good in each other.

5)  If you don’t have a lot of space for overnight company, then be honest and provide them with suggestions nearby where they can stay. You want to enjoy your company and not end up resenting their presence. They could still join you for meals and activities, but provide you some much needed rest and quiet when they step away.

Share the responsibilities. There is no reason why each person can’t help bring part of the meal. Don’t take on so much that by the time your company arrives, you are really too exhausted to enjoy them. Maybe you could consider making some dishes in advance and thaw them out before they arrive. That can be your secret!

6)  Try to create calm in your home. Consider playing soft music to fill the air. That can be very relaxing, along with scented candles. Consider asking guests to put their electronic devices away or even collect them, so you can focus on each other and not those screens. There is plenty of time to catch up on messages and postings later. Let this be the time to truly be together.

7)  Make a list of things that come into your mind, in advance of the gathering, of things that need to be done that can help make things go more smoothly. Many of us living with pain get “brain fog” and can easily forget. I find this simple task takes the stress off me, knowing that I will read that list and remember all the things I need to keep me safe, medicated and protected.

Being with family and friends can leave us with wonderful memories. But exhaustion, caused by pushing and pushing yourself, ends up deleting the fun. Those of us living with chronic pain and illness can’t afford to set our health back by pretending all is just fine.

Rest, make simple plans, share the responsibility, and learn how to relax and enjoy. You won’t regret it.

 Happy holidays!

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Choose the Green Door

By Barby Ingle, Columnist 

When there is a hallway full of doors and you don’t know which one contains the cure, where do you start? Which door do you choose?

I go with the green one. The one that makes the most sense to me personally. The door is a place to start finding answers and access to care. If what we need is not behind that door, remember there are other doors down each corridor of life.  

Patients all over America have been struggling to get good healthcare for chronic conditions since I can remember. These patients, along with their loved ones, healthcare providers, and millions of taxpayers, are suffering the pitfalls of a healthcare system that too often doesn’t work.  

In most chronic care situations, we are not taught self-advocacy skills. As a result, we often don’t know our rights or responsibilities as patients. 

For this terrible situation to stop, it is going to take a combined effort on the part of many people. But it starts with us becoming better informed, proactive, and organized as patients.  

Better organization, prevention programs, access to care, and learning the tools to take care of ourselves between appointments will go a long way towards ending this crisis in our society.

I talk a lot about being prepared and organized as a patient to receive the best healthcare possible (see “What to do Before Seeing a Doctor”). Starting a journal and keeping a checklist of things to talk about with your doctor will help guide you through the minefield of the healthcare system. It takes work in the beginning, but gets easier as you go. You’ll save yourself more pain and challenges in the future.

Finding the Right Fit

When it comes to living the best life you can, every person has choices. There are even more choices for those who have chronic pain or illness. It is important to find the right fit for you. Patients can either let the disease run them or sort through the system and take control of their disease.

Your first goal should be getting a correct diagnosis. If you need to go to multiple doctors, take the time to do it now to prevent your health from deteriorating further.

Each doctor has their specialty and treatment options that they are comfortable with. This does not always mean that they are the right doctor for you or that another treatment will not work. If you are not comfortable with the treatment offered by your current provider, find a doctor who you trust to try different options. 

It can be very aggravating to deal with a kidney stone or torn ligament, but at least there is an end in sight. You can get back to a “normal life” once the stone passes or the bone break heals. Other conditions such as high blood pressure, heart failure, diabetes, Lyme disease, multiple sclerosis, RSD, arthritis, osteoporosis, neuropathy and other chronic conditions can be more of a challenge for patients and usually last a lifetime.

Coping with a chronic condition takes hope and self-awareness. Take charge of your disease instead of letting it rule you. Some doctors, friends, and even family will say, “Just live with it” or “Get used to it.” But you are the one who lives with a chronic condition. You can learn to live with it and how to manage life around the symptoms and problems without losing yourself. 

Staying Positive

Being positive and hopeful in what you can make of your future is a big factor in determining whether you have a successful outcome. We need positive attitudes to make lifestyle changes. Some will be easier, such as changing your diet or beginning a physical therapy routine. Others will be more difficult, like having to sever ties with a family member or friend who is hindering your recovery. We also need the support from our healthcare providers.

Most of all, we need to recognize that we are responsible for ourselves and that a successful treatment may require changes that only we can provide to ourselves.

We all deserve to have our pain taken seriously. To have the pain managed well instead of under-treated, untreated, or over-treated is important. Pain must be managed effectively and in a timely manner, with the underlying condition being addressed while the pain is being managed.

Do not assume that your doctor knows how to treat your pain. Every patient is different and doctors only know what they have been exposed to in their practices, schooling and continuing education classes. We must keep going until we find the door that is right for us. 

Don’t forget your lifelines. There are prescription programs to help cover co-pays, ways to appeal insurance decisions, and ways to negotiate with your providers to get the care needed. The goal is to receive effective relief and be able to organize and manage all aspects of life.

Finding good healthcare and support systems will lower the number of hospital visits, time spent in the hospital, unnecessary trips to the emergency room, repeated tests, and inadequate treatments. All of which contribute to the high costs of healthcare. On average, living with chronic pain costs $32,000 per patient per year.

Staying organized, keeping good records, and communicating with your pain care team will help you get access to proper and timely care.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Communication is Key with Chronic Pain and Illness

By Jennifer Martin, PsyD, Columnist

Have you ever felt like the people in your life have no idea what you are going through?  Like they just don’t get it?

Your friends keep asking you to go out with them for a late night, even after you have told them a thousand times you can’t do things like that anymore. 

Your husband doesn’t understand why some nights you just don’t want to be touched. 

Your parents don’t get why you can’t do 10 things per day like you used to.

The truth is, unless it happens to them, your loved ones will never fully understand what you are going through.  And you can’t expect them to.  There are some things you can do however to try and ease some of your frustrations.  In my opinion, communication is key.  And if you are thinking right now, “All I do is communicate and they still don’t get it,” then maybe it is time to try a new tactic.

It is essential to find a way to communicate with your loved ones about your wants and needs. This is so essential because everyone’s wants and needs are different and we as humans are not mind readers. 

Your loved one may think he is helping you when he does the laundry so you don’t have to, but for you that may not be something you want help with.  It may be the one activity you can do without pain and it may help with your sense of purpose. 

Or you may want your very active family to slow down a little because you can’t keep up anymore without pain and exhaustion.  But you haven’t told them yet because you don’t want to change their way of life on account of you.

How are the people in your life supposed to know these things unless you tell them?

Or maybe you have tried to communicate these things and they just don’t get it.  What do you do then?

The first step is to find the right time to communicate.  Over drinks in a loud bar or right before bed when everyone is tired may not be the best time.  Find a time to have a sit-down conversation in a quiet room with your loved ones, whether it is one person at a time or all together.  Think about what you want to say beforehand and write down some notes, so you make sure to talk about everything you want to.

Next, if needed, educate them a little on your condition and how it affects you.  You may be surprised by how little people know about chronic illnesses, even those closest to you.  They may understand the basics about your condition, but not enough to help you in the way you need them to.  They may not understand how dramatically life has changed for you or how much you struggle.

Finally, talk to them about how they can support you.  Tell them what you want from them and what you need from them.  Mention some of the things they are doing that are very helpful and that you would like them to continue and then help them understand what you need them to do differently. 

For example: “It is really nice of you to help me with the laundry but that is something I would like to do on my own.  It gives me a sense of purpose and makes me feel like I am accomplishing something.  Instead, I would really like for you to help more with the dishes.  That is more difficult for me to do and it really hurts.”

It may take more than one conversation for your friends and loved ones to really begin making the changes you would like.  But if you keep gently reminding them what you want and need, it is likely that you will see some changes.

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness. 

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases, as well as other types of chronic pain.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The 7 Psychological Stages of Chronic Pain

By Jennifer Martin, PsyD, Columnist

Have you ever wondered if other people with chronic health conditions feel the same way you do?

Throughout my years with chronic pain and illness, along with the hundreds of patients I have counseled, I have found that, while everyone copes in their own way and experiences their condition uniquely, there are common feelings that most of us share.

When I first began counseling chronic pain patients, I often used Elizabeth Kübler-Ross’s “Five Stages of Grief” to help them understand what they were going through. 

But as time went on, I reflected on what I experienced with my own chronic conditions and also on my patients’. It seemed that these stages, while very helpful, didn’t fully explain the broad range of emotions that people with chronic illness experience. 

After all, Kubler-Ross developed them to explain the responses to grief and loss. Having a chronic illness can be viewed as a type of loss, but they were not developed specifically to explain the emotions of people experiencing chronic conditions.

I used Kübler-Ross’s stages as a model to develop the Seven Psychological Stages of Chronic Pain and Illness: 

1. Denial

In this stage, we are in a state of shock and refusal. We wonder how our life is going to change and how we are going to live with those changes. Denial and shock help us to cope and make survival possible.

This stage can be dangerous for people with chronic pain and illness because if they are in denial about their condition, they may not take the necessary steps to get themselves the treatment they need.

Example: “It’s not a big deal, it will go away” or “The doctor is wrong, I don’t have diabetes.”

2. Pleading, Bargaining & Desperation

This is the stage where we want more than anything for life to be what it once was. We become fixed on anything that could make our illness and pain go away -- or anything that could give us some semblance of the life we once had. 

We may find fault in ourselves and what we think we could have done differently. We may even bargain with the pain or illness because we would do anything not to feel them anymore. Guilt is common when bargaining. 

Example: “Please just don’t let this ruin my life” or “If you make the pain go away, I promise I’ll be a better person.”

3. Anger

After we conclude that our pleading and bargaining is not going to change the diagnosis, anger sets in. 

Anger is a necessary stage of the healing process. Feelings of anger may seem endless, but it is important to feel them. The more you truly feel anger, the more it will begin to subside and the more you will heal.  Your anger has no limits and it may extend to your doctors, family, friends and loved ones.

Anger is often felt later on when the illness and pain progresses, or holds us back from doing the things we would like. 

Example: “This isn’t fair! I didn’t do anything to deserve this!” or “Just give me something that will make me feel better!”

4. Anxiety and Depression

Feelings of emptiness and grief appear at a very deep level.  This depressive stage feels as though it will last forever.  It is important to understand that this depression is not a sign of mental illness.  It is the appropriate response to a loss or a life-altering situation. 

We may withdraw from life and wonder if there is any point in going on.  Depression after a loss is too often seen as unnatural or something that needs to be snapped out of.  Being diagnosed with a chronic illness or experiencing chronic pain is a loss – a loss of the life you once had.

Having a chronic pain or illness may also bring up feelings of anxiety; anxiety about what the future holds, anxiety about not being able to live up to expectations, anxiety about social situations, anxiety about medical bills, etc.

Example: “I’m going to be in pain forever so why even bother?” or “I’m going to be in debt forever.  How am I ever going to pay off these medical bills?”

5. Loss of Self and Confusion

Having chronic pain or illness may mean giving up some key aspect of what made us who we were.  It may mean an inability to be physically active like we once were.  It may mean not being able to be as sociable as we would like or it may even mean giving up a career. 

You may wake up one day and not recognize the person you are now.  You may question what your purpose in life is now.  This stage may occur at the same time as anxiety and depression, or it may be separate.

Example: “I don’t even recognize myself anymore.” or “My career was my identity.  Who am I without that?”

6. Re-evaluation of Life, Roles and Goals

Having a chronic condition often means giving up a lot.  We are forced to re-evaluate our goals and futures.  We are forced to re-evaluate who we are as a husband, wife, mother, father, sibling or friend.  While we once had a successful career that gave us purpose, we may find ourselves beginning to question what we can do for work in the future and how we can contribute to our families. 

While we were once able to do it all, we are now re-evaluating what absolutely has to get done during our days and how we can accomplish these goals while still remaining in a positive mood.  Re-evaluating your life, roles and goals is a crucial first step in accepting your condition.

Example: “I may not be able to be a nurse anymore but maybe I could teach classes a couple times per week.” or “I can’t be as physically active with my husband anymore so what else can I do to show him I love him?

7. Acceptance

Acceptance is often confused with the idea of being “OK” with what has happened. This is not true.  Many people don’t ever feel OK about having to live with pain or an illness for the rest of their lives.

This stage is about accepting the reality of your situation and recognizing that this new reality is permanent. We will never like this reality and it may never be OK, but eventually we accept it and learn to live life with it. It is the new norm with which we must learn to live.

We must make adaptations and alterations to our lives. We must find new things that bring us joy.

Example: “I’m not going to let this define me. I will learn to deal with this the best I can.”

It's important to remember that these stages are not linear.  While some people begin in the denial stage, move through each stage and end with acceptance, many people jump back and forth throughout the stages.  I hope that these stages give some comfort to those who are experiencing chronic conditions.

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness. 

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases, as well as other types of chronic pain.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.