Communication is Key with Chronic Pain and Illness

As published on Pain News Network (www.painnewsnetwork.org) on January 5, 2015

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.

Mourning the Loss of a Life Once Had

As published on Pain News Network (www.painnewsnetwork.org) on October 20, 2015. 

Being diagnosed with a chronic condition is a loss.  In fact, it is comprised of many losses. 

It may be a loss of the person we used to be.

It may mean a loss of independence.

It may mean a loss of dreams and goals.

It may mean a loss of some of the people in our lives who we thought were close.

It is the loss of the life we once had.

For many of us with chronic conditions, living with pain or illness means daily medications, injections, surgery, physical therapy, and weekly or monthly doctor appointments.  Not to mention living with constant pain. 

These are things we could never have dreamed of before our diagnosis. We are forced into a life-long journey that is strange, painful and full of new challenges.

We now need to try to figure out how to help our family and friends understand what we are going through, while we ourselves try to decipher what it means for our future.  We need to figure out how to balance work, family, kids, taking care of a home, and hobbies – all now with pain, fatigue and frustration. 

Often times, depression and anxiety step in when we realize that the life we once had is now gone and that our future is filled with the unknown.  The mourning process begins.

It is important at this point to allow ourselves to experience the mourning process.  There is no one-size-fits-all when it comes to grief and mourning.  Cry, scream, and yell if you have to.  Talk to a friend or therapist if it would help.  Start journaling.  Write a letter to your pain and rip it up or burn it.  It doesn’t matter what you do -- just do something!  And then, at some point, it is important to try and live a new normal.

Finding a new normal means weaving our way, however slowly, through the new challenges we face daily.  Do some research and find a great doctor who you trust.  Research the medications you are being prescribed.  Find what works for you, whether it’s hot/cold packs, a heating pad, medications, rest, a support group, yoga, acupuncture, meditation, or light exercise.

Plan for the future as best you can:  Set new goals and make a plan to reach them.  Do what you can each day.  Talk with your family and friends about what you need from them and work on being comfortable accepting help.

Having a chronic condition, however painful, uncomfortable, horrible, scary and unfair, doesn’t mean you can’t be happy again.  But in order to be happy it is important to mourn the loss of who you were and slowly put the pieces of your puzzle back together.

 

Dealing with Fatigue, Frustration and Fear

As published on Pain News Network (www.painnewsnetwork.org) on August 6, 2015.

Sometimes it just gets to be too much; the pain, the fatigue, the frustration and the fear. 

Wondering if things are ever going to get better.

Wondering if there will ever be a day without pain.

I have always thought of myself as a stubborn and determined person.  When I was four years old I had to wear a cast on my right leg to help stabilize my arthritic ankle.  Even at four, I didn’t let that stop me from keeping up with my twin brother on the playground.

While I was in the middle of my j-pouch surgeries I was determined to finish my doctorate degree.  I finished my dissertation and two weeks after my second surgery, while in pain and out of it because of the pain meds, my mom drove me to L.A. so I could defend my dissertation and get that “doctor” title that I had worked so hard for.

Three months ago I hurt my right knee.  After two rounds of prednisone, physical therapy, rest (sort of) and X-rays, my rheumatologist still doesn’t know what’s wrong and I still have pain every day.  Since the injury, and against the wishes of my husband to stay home and rest, I have continued to go to the gym so I can at least get a kick ass arm workout.

Why have I done all of these things?  Because I’m stubborn.  And I’m determined.  I try my hardest not to let the pain stop me from doing the things I want to do.  I try to be as normal as possible, because I hate feeling like I can’t do something and I hate for others to think that I am weak, even though I know that I am not.  I also try to take advantage of each day as much as I can because I never know when or if I will be in the hospital again, when or if I will have to have another surgery, or if my arthritis will get worse.

But sometimes it just gets to be too much.  Dealing with pain every day is tiring!  And dealing with the fatigue that comes along with the pain is tiring!  In addition to that, the frustration and fear that things will never get better and that they could possibly get worse can be incredibly overwhelming.

So here is what I do when things get to be too much.  I hope some of these tips will help those of you reading this:

• I take a little time for myself, even if it’s just five minutes.  If I am at work, my favorite thing to do is close my office door, open YouTube on my computer and put on some yoga music.  Then I sit back, close my eyes and take deep breaths.  This does amazing things for my mind and my body.
• I try to remember what is good and positive in my life: my son, my husband, my family, my friends.  While I still have pain, there is still so much I can do.  It helps to focus on what I can do instead of what I can’t do.
• Get outside.  I love the beach.  It does something for me that no other place can.  But I can’t always get there, especially with family and work demands.  If I can, that’s my preference, but if I can’t, even just sitting in my backyard can do the trick.  Fresh air and vitamin D are proven mood elevators.
• I write.  Writing about the pain, the frustration and the fears can be very therapeutic.  Have you ever wanted to vent so badly about the way you are feeling but don’t want to bother anyone with it?  Writing down exactly what you would say to someone else is a great alternative.
• I focus on a goal and plan on how I am going to reach it.  This helps me to focus on something other than my pain and fears.  It can be a big goal (passing my final licensing exam) or a small one  (doing as much as I can this weekend with my son despite my knee pain).
• Sometimes I just have to take a rest and realize that it is okay.  This is really hard for me to do but sometimes it is necessary.  Those of us with chronic pain can’t be expected to do everything and we can’t expect ourselves to do everything. 

Balance in life is key and part of that is taking care of ourselves and letting go of the guilt that comes along with it.

When Nobody Believes You

As published on Pain News Network (www.painnewsnetwork.org) on April 30, 2015


“It’s all in your head.”

“Your doctors are wrong.”

“You don’t really feel as bad as you say you do.”

“You must not really be in that much pain because you look fine.”

These words are far too common in the ears of chronic pain patients.  They can make one feel isolated, alone, and as if nobody cares.

One of my patients told me the other day, “My husband doesn’t believe I’m in as much pain as I say I am.  He thinks it’s all psychological.”

A week earlier, a friend told me, “No matter how many doctors and specialists I have been to, my family still does not believe my diagnosis.  They think it is wrong.  I feel like I have to hide my pain around them.”

I listen to story after story from patients and friends with chronic pain stating the same thing: that family members, friends, doctors, co-workers, teachers, etc. do not believe they are in as much pain as they say they are. Often it’s because they look fine on the outside.
 

 

They have told me they feel like they are whining about their pain, that people just brush them off or that they feel guilty for even talking about their pain. 

They ask me, “What’s the point? I feel like nobody believes me anyway.”

No matter how many times I hear these stories, it still angers me.  Chronic pain is not something that anyone should feel like they have to convince another person of.  It is not something to feel guilty about and it is not something anyone should feel like they have to hide -- especially from those closest to them.

Unlike having diabetes, cancer or a broken arm, most people do not understand chronic pain and the effects it has. And many who think they understand are misinformed.

What they often don't understand is that chronic pain sufferers don’t always look sick.  Because their pain is chronic, they have learned to go on and live their daily lives to the best of their ability.  Just because you can’t physically see someone’s pain, that doesn’t mean it is all in their head and it doesn’t mean they are fine.

And being told that their doctor must be wrong or that they should hide their pain only makes things worse.

When someone is diagnosed with chronic pain, they want more than anything for that diagnosis to be wrong.  However, more times than not, the diagnosis they receive, especially if they have been to multiple doctors, is correct.  After the shock and denial has worn off, that patient, more than anything, is going to need support and acceptance, not criticism and disbelief.

Being diagnosed with a chronic condition is life changing, even for the strongest individuals.  It means finding a new normal, contending with things that are unimaginable and going through life feeling like those closest to you will never understand.

It means trying to make sense of this new person they have been forced to become and the new reality they are now living.  All of these things could be managed just a little easier by hearing the simple words, “I believe you.”

Accepting Chronic Pain: Is it Necessary?

As published on Pain News Network (www.painnewsnetwork.org) on March 25, 2015

A patient of mine told me the other day, “I don’t think I will ever be able to accept my chronic pain. It has completely changed my life.” 

I think this is something that most people with chronic pain contend with at some point in time; wanting to hold onto hope that their diagnosis isn’t chronic or not wanting to come to the realization that they will have to live with the pain forever.

When most people hear the word “acceptance” they equate it with the notion that they should feel that it’s okay or it’s alright to have a chronic condition.  Many people don’t ever feel okay about having to live with pain or an illness for the rest of their lives. It is not something that is easy to get used to and it’s not fair.

• Accepting chronic pain does not mean giving into it and it doesn’t mean that you stop looking for treatment.
• Accepting chronic pain does not mean accepting a lifetime of suffering.
• Accepting chronic pain does not mean you are never allowed to feel angry or sad.
• Accepting chronic pain does not mean that you have to give up hope for the future.

When I use the word “acceptance,” I mean accepting the reality of your situation and recognizing that this new reality could be permanent. Those of us with chronic conditions may never like this reality and it may never be okay, but eventually it is necessary to accept it and learn to live life with it. It is the new norm with which we must learn to live. 

Acceptance also involves making adaptations and alterations to our lives.  We must find new things that bring us joy and we must have hope for the future.

• Accepting chronic pain means learning to live again.
• Accepting chronic pain means advocating for ourselves and our health so that we can be as healthy as possible.
• Accepting chronic pain means learning our limits and learning to cope with feelings of guilt when we have to say “no.”
• Accepting chronic pain means being able to look at your diagnosis as something you have, not who you are.  Your condition does not define you.
• Accepting chronic pain means re-evaluating your role as a husband/wife, mother/father, etc. as well as your life’s goals -- and figuring out how you can maintain these roles and attain your goals with your chronic condition.

For many of us, learning to accept our chronic condition isn’t easy.  It is a learning process with a lot of ups and downs.  It is something we may resist and something we may think impossible.  It is difficult to accept something that has completely changed our lives and possibly the direction we thought our life was going to take.

Why is it necessary to accept your chronic condition?

Once you are diagnosed with a chronic condition, it will be always be with you.  The sooner you are able to begin the process of acceptance, the sooner you will be able to learn exactly how to live with it.  It is also how you will learn to cope.

Accepting chronic pain means learning to live life in a different way than before your diagnosis.  It means learning to pace your activities, educating yourself, taking your medications, advocating for yourself, and surrounding yourself with support.  It also means accepting that some aspects of your condition are out of your control. 

Chronic pain can be unpredictable.  There may be days when you feel in control of your pain and you are able to accomplish everything you would like to.  There may also be days when your pain is unbearable, you feel angry about your situation, and all you can do is rest.  Accepting your chronic pain means adjusting and adapting to the ways in which your life is different now that you may be living with this kind of unpredictability.

Your life may never go back to what it was prior to your chronic pain.  But that doesn’t mean you can’t live a happy, successful, hopeful life with pain.  Learning to accept your chronic pain can help you get there.

The Sleep-Pain Connection

Sleep and pain are quite connected.  Disturbances in sleep patterns are either a symptom or cause of a problem.  With chronic pain, it is often both a symptom and a cause of increasing pain.

When I first began working with chronic pain patients I read about an interesting study where “normal volunteers” were awakened throughout the night over successive nights.  They were awakened such that their REM sleep was disturbed each time.  After a few nights, the volunteers developed symptoms of a chronic pain disorder called fibrositis.  Fibrositis is characterized by a variety of symptoms.  The primary symptoms are painful patterns of muscle points in the neck, shoulders, arms, back and legs and a feeling of fatigue.  Headache and related problems often accompany these fibrositis symptoms.

The neurochemical serotonin is involved in many things, including sleep, digestion, mood and pain.  We also have natural pain relievers called “endogenous opioids”.  Changes in serotonin levels participate in lowering the levels of these natural pain relievers which allows an increased reception of pain throughout the nervous system.  This pattern creates a change in sleep and mood.

After learning about this sleep-pain connection years ago, I made it a point to concentrate on sleep hygiene with all of my chronic pain and chronic illness patients.  If you are having difficulty sleeping, try some of these sleep hygiene techniques to see if they help you get a more continuous, restful night sleep.

During the Day:

• Remain as active as possible during the day without overdoing it.
• Avoid naps unless necessary for pacing.  If naps are necessary, keep them to 20 minutes maximum.  The more you sleep during the day the more difficult it will be to sleep at night.
• Limit caffeine, especially in the afternoon.
• Participate in regular exercise – whatever you can do: walking, swimming, etc.
• Take a hot bath or shower to relax yourself.
• Keep work out of the bedroom.  The bedroom should only be used for sleep and sex.
• Get out of the house and do something, even if you don’t have anything planned.

Evenings and Bedtime:

• Establish a bedtime routine: brushing your teeth, washing your face, changing into pajamas, etc.
• Engage in a relaxing activity such as reading or watching TV for a set amount of time.
• Avoid caffeine in the evening.
• Stop drinking fluids at least an hour before bed to avoid waking in the middle of the night to use the bathroom.
• Prepare for the next day.  Set out your clothes, write down things you need to get done, concerns you may have, etc.  That way, these thoughts won’t keep you up at night.
• Try some light stretching before bed.
• Go to sleep and wake-up at the same time each day.
• While in bed, engage in relaxation techniques, such as progressive muscle relaxation (if it is not painful for you), deep breathing or pleasant imagery.
• Keep your bedroom dark, quiet and comfortable. 
• Do not focus on sleep.  Thinking about how you need to get to sleep or worrying about not being able to sleep will only prevent you from sleeping.  Instead, focus on relaxation and deep breathing.
• Use thought stopping to keep yourself from thinking negative thoughts.
• Use a heating pad or ice pack to help relax your muscles.

Interrupted Sleep:

• Use relaxation techniques to help you get back to sleep.
• Stretch or change positions.
• Use whichever techniques helped you get to sleep in the first place.

Sweet dreams!

10 Life Lessons I Have Learned From Having a Chronic Illness

Having a chronic illness comes with a lot of information you wish you didn’t have to know.  I have had rheumatoid arthritis since I was 18 months old, so for me, I have never known life without a chronic illness.  There wasn’t much I thought living with a chronic illness could teach me.  I knew it meant going to doctor’s appointments and taking medication for the rest of my life and that there were going to be some things I wanted to do but couldn’t.  Then, when I was 25 I was diagnosed with ulcerative colitis.  At the time, I had no idea what ulcerative colitis even was.  Throughout my journey with ulcerative colitis and the subsequent six surgeries I have had as a result, I have realized that there was a whole lot about living with a chronic illness I didn’t know prior to my diagnosis.  Being on death’s door can teach a person a lot.  So can having six major surgeries and living with the constant thought in the back of your head that at any moment you could be sick again or back on the operating table.  Living with a chronic illness has taught me a lot of life lessons.  

1.  Don’t ever take anything for granted.

2.  Take a moment each day to appreciate the good things.

3.  It’s okay to take time for yourself.

4.  Just because someone looks fine on the outside doesn’t mean they aren’t struggling on the inside.

5.  It’s okay to rest.  In fact, it may make you a better mother/father, sister/brother, friend.

6.  It’s okay to say “no”.

7.  Time is a valuable resource.  Use it wisely, especially when you are feeling well enough.

8.  A great marriage is one that has been tested by chronic illness and has come out stronger on the other side.

9.  Great friends are those who care about how you are doing but do not define you by your illness.

10.  Having a chronic illness does not make you a weak person.  In fact, it makes you stronger.  Not everyone could deal with what you are going through.

What are some of the things living with a chronic illness has taught you? 

Common Misconceptions About the Chronically Ill

Misconception #1: You look fine therefore you must feel fine

This is probably one of the biggest misconceptions about the chronically ill. People with a chronic illness may look fine on the outside but that doesn’t necessarily mean they feel fine on the inside. Not everyone who has a chronic condition is in a wheelchair or walks around with a limp. In fact, most chronic illnesses are invisible.

Misconception #2: It must be so great not to have to work

Sure, it sounds great to a lot of people not to have to work…if they had the choice. Most of the time, people with chronic illness are not working because they can’t. Most people with chronic illness would gladly trade their illness for the 40 hour work week again.

Misconception #3: Getting more rest will make you feel better

For a lot of people with chronic illness, rest is helpful. But it may not make them feel drastically better. It’s not going to make their symptoms go away and it may not mean that they are then going to feel well enough to go to an event or social engagement.

Misconception #4: Chronically ill people are just lazy

Chronically ill people are not lazy. Most wish they could engage in the mundane chores and tasks that most people complain about. They would gladly do the dishes, take out the trash, and pick up the dog poop if they could. They would be happy to work eight hours, take the kids to practice, clean the house, help the kids with their homework and cook dinner all in one day if it meant they didn’t have a chronic condition that was keeping them from doing these things.

Misconception #5: If someone with a chronic illness is out living their life they must not really feel that bad

Just because someone with a chronic illness isn’t at home in bed all of the time doesn’t mean they’re not really sick or that they don’t really feel that bad. There are still things that need to be done despite having a chronic illness, like getting a few groceries or walking the dog down the street. People who have chronic illnesses do these things despite feeling horrible some of the time. It is a part of life with a chronic illness.

Gratitude – It’s What the Doctor Ordered

It’s that time of year. The time when we are supposed to concentrate on what we are thankful for. For some, that’s an easy task. For others it may be more difficult. When you live every day with a debilitating illness it is often hard to see past the negatives to take a closer look at what you have to be thankful for. This is the challenge I am giving you. I know what you may be thinking: “That’s a lot easier said than done.” I know. I have been there. I’ve been in that space where you are so sick and everything seems so overwhelming that you can’t think of anything to be grateful for. All I am asking you to think about are the small things in your life. As one of my patients today said “I’m grateful I was able to shower by myself this morning”. Those small things can add up.

Living with a chronic illness can force you to change your life in ways you didn’t intend or to give up some of your dreams and goals. But it can also make you more empathetic to others who have an illness. It can teach you to appreciate the small things on the days you do feel okay, like taking a shower on your own, walking your dog down the street, listening to good music, or eating a good meal. It can teach you to appreciate the good people you have in your life. It can help you focus on the things in life that really matter.

How else can being grateful improve your life? Over and over, studies have shown that people who practice being grateful are healthier both mentally and physically. In terms of chronic illness, studies have shown that grateful people may be more likely to:

• Take better care of themselves physically and mentally
• Get a better night’s sleep
• Engage in more protective health behaviors and maintenance
• Have better responses to various difficulties
• Get more regular exercise
• Eat a healthier diet
• Schedule and keep regular physical examinations with their doctor
• Cope better with stress and daily challenges
• Feel happier and more optimistic
• Have reduced physical symptoms
• Maintain a more optimistic view of the future

So, your challenge this week is to think about one thing each day that you are thankful for, even it’s as small as “I read a good book today”. Sometimes the small things can be huge.

Is it Really Important to Have a Positive Attitude When Dealing With a Chronic Condition?

One of the last things someone with a chronic illness or chronic pain wants to hear is that they should think more positively. After all, it’s hard to have a positive attitude when you are in terrible pain or feel horrible and it may feel like some of the blame for how you feel is being placed on you when told this. However, studies have shown that having a positive attitude can help people with chronic illness/pain both mentally and physically. It makes sense, right? We know that chronic stress, anger and other negative emotions can have a detrimental impact on our health and lead to problems with brain and cardiac function. We know that it can lead to wear and tear of our bodies.

That said, it is unrealistic to expect people dealing with chronic pain or a chronic illness to have a positive attitude all of the time. It’s just not possible. In fact, being cheerful all of the time when dealing with a chronic condition can sometimes be linked to denial of the illness, which can lead to negative psychological consequences.

In my personal and professional experience, I’ve found that most people suffering from chronic pain and chronic illness want acknowledgement that what they are going through is real and that it is okay not to be okay sometimes. Pressure to be optimistic all of the time can lead to increased negative emotions. By allowing sufferers of chronic conditions to experience the uncertainty and frustrations that come along with having a chronic illness or chronic pain, family, friends and loved ones are actually making way for more positive feelings because not only can the patient express their feelings during difficult times rather than holding it in, the pressure to be optimistic all of the time is gone.

It is important for people with chronic conditions to find a good balance in their lives. It is also important for them to focus on what they have control over (diet, exercise, taking their medications, who is in charge of their treatment), rather than what they don’t (disease progression). Feeling in control leads to more positive emotions.

So, is it really important to have a positive attitude when dealing with a chronic condition? Yes. But it is also important to be able to feel and express the anger, frustration and uncertainty as well.