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.

Health Central Story: Turning Points

A couple months ago, I was contacted by healthcentral.com because they wanted to do a story on me about how having ulcerative colitis led me to my career of counseling others with chronic conditions. Last month they flew out to film it. It was extra special because my husband and son were able to be a part of it. Here is the link for those who want to check it out!

http://www.healthcentral.com/ibd/d/immersive/living-ulcerative-colitis?ic=caro

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? 

Psychological Stages of Chronic Illness/Chronic Pain

A little over a year ago, I wrote a post about the five stages of grief developed by Elizabeth Kubler-Ross and how they could be applied to patients with chronic conditions.  Since that time I have thought a lot about the feelings and reactions I had when I was diagnosed with ulcerative colitis and the feelings and reactions I have had since my diagnosis.  I have also paid close attention to what my patients have been through and are currently going through and I decided that while the stages of grief are accurate, there seemed to be some things missing for those of us with chronic conditions.  As a result, I have added/changed some stages.  Remember, 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.  Please let me know what you think!

Denial and Disbelief

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 illness/pain because at this stage if they are in denial about their illness or pain, 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.”

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/pain go away or anything that could give us some semblance of the life we once had.  We become desperate just to be “normal” again.  Guilt is common when bargaining.  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 it anymore.

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.”

Anger

After we conclude that our pleading and bargaining is not going to result in a change in diagnosis, anger sets in.  It is also an emotion that is often felt later on when the illness/pain progresses or holds us back from doing the things we would like.  Anger is a necessary stage in the process of healing. Feelings of anger may seem never ending, but it is important to feel the anger. The more you truly feel it, the more it will begin to subside and the more you will heal.  Your anger has no restrictions and it may extend not only to your friends, doctors, other medical professionals, your family, yourself and your loved ones.

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

Anxiety and/or 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 or that there is something “wrong” with you.  It is the appropriate response to a life-altering situation.  We may withdraw from life and may 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 illness or chronic pain also may bring up feelings of anxiety; anxiety about what the future holds, anxiety about not being able to live up to expectations now that this illness or pain is present, 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?”

Loss of Self/Confusion

Having a chronic illness or chronic pain 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 is now, while before your diagnosis it was so clear.  This stage may occur at the same time as Anxiety and/or 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?”

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 a 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 at the end of the day.  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?

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 or all right 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 the permanent reality. We will never like this reality and it may never be OK, but eventually we accept it and we learn to live life with it. It is the new norm with which we must learn to live and we must go on despite it. We must make adaptations and alterations to our lives. We must find new things that bring us joy and hope.

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

(c) 2015 Jennifer Martin, Psy.D