When Nobody Believes You

As published on Pain News Network (www.painnewsnetwork.com) 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.com) 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 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

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.  Guilt is often bargaining’s companion.  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 of the healing process. Feelings of anger may seem endless, but it is important to feel it. The more you truly feel it, the more it will begin to subside and the more you will heal.  Your anger has no limits and it may extend not only to your friends, doctors, 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.  It is the appropriate response to a loss or 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, whereas 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 we loved, 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. 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”.

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.

What Not to Say to a Caregiver

While I have not been in the caregiver role, I have compiled this list as a result of my conversations with caregivers about their experiences. For those of you who have been caregivers, what do you think about this list? What would you add?

I don’t know how you do it. You must be a saint. While a comment like this is meant to be a compliment and one that expresses admiration, caregivers often feel frustrated, anxious, depressed and uncertain at times. They may feel like there is something else they could or should be doing.

Have you asked the doctor about _____? or Have you tried _____? Caregivers often try everything and anything they can to help their loved ones. One of the last things they want is to be questioned or given suggestions by another person.

You look so tired. Caregivers generally have good reason for looking tired. They are busy taking care of and worrying about their loved one, often sacrificing their own care. They know they look tired. They don’t need it pointed out to them.

I know just how you feel. No one can understand what a caregiver is going through unless they themselves have been a caregiver. And even then, everyone processes emotions differently so one person’s experience may be completely different than another.

Don’t worry, it will be okay. Sure, it may be okay. But maybe it won’t. Telling someone that it will be okay without the absolute knowledge of that can make the caregiver feel like their feelings aren’t valid.

Make sure to take care of yourself. Caregivers often know they should take care of themselves too. Finding the time and energy to do so is another story. They are often too busy or exhausted to take care of themselves as well as they should.

You should _______ Once again, caregivers are doing the best they can. They don’t want to be told what they should or shouldn’t be doing because it may cause them to feel like they aren’t doing a good enough job.

I’m sure this is in God’s plan. Whether it is or isn’t in God’s plan still doesn’t make it okay that their loved one has to suffer.

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.

Do You Feel Like a Burden?

I have counseled hundreds of patients with chronic pain and chronic illness. Most of them have said “I feel like a burden to my friends and family”. I too have felt that way at times. It’s a common feeling for those of us with chronic pain or a chronic illness. Chronic conditions affect not only the patient but those close to the patient as well. Even though we didn’t do anything to cause our condition, we feel like it’s our fault and that we are making the lives of those around us more miserable. So what can you do to feel like less of a burden to your friends and family? I hope the following suggestions will help.

Contribute what you can, when you can. You may not be able to do as much as you used to, but that doesn’t mean there isn’t anything you can do. You also may not be able to do things as quickly as you used to. But that’s okay too. Take inventory of the chores and activities you can do and help out in those ways. So you may not be able to wash the heavy pots anymore. But can you wash the small dishes or load some of the dishes in the dishwasher? You may not be able to mop the floors anymore, but can you wipe down some of the counters? You may not be able to fold the laundry, but can you load the washer? Anything that you can still do will be appreciated.

Keep the lines of communication open. We can’t expect the people in our life to read our minds. They may not know if you are in pain or are not feeling well. It’s important to communicate about the way you feel, not only physically but emotionally, so your loved ones and the other people in your life know how they can help you or if you even want the help or if you just to be left alone. Also, in addition to educating yourself about your illness or chronic pain, educate those in your life as well so they know what to expect and there are few surprises.

Make your spouse, significant other, friends, etc. the center of attention at times. Do something nice for the close people in your life once in a while to show them how much you appreciate them. It can be as simple as telling them how much you appreciate them or telling them to go out for the afternoon and enjoy themselves. Talk to them about what they are going through to see if there is anything you can do for them. It’s important for us, the patients, to remember that we aren’t the only ones affected by our illness and that our caregivers need attention too.

Maintain a positive attitude. This is particularly hard on the days you are experiencing a lot of pain or just feel horrible. And I’m not advocating that you hide your emotions or act like someone you are not, especially on days that are particularly hard. But maintaining a positive attitude as much as possible is not only good for your well-being but for the well-being of others around you. It can help you better cope with your pain or illness and it can help you avoid taking out your frustrations on the people around you who are only trying to help and care for you.

Focus on something other than your illness/pain. No one wants to hear about how terrible someone feels all the time and no one wants to talk about how terrible they feel all the time. I know I sound like I’m contradicting myself because I told you above to communicate with the people in your life about your illness/pain and how you feel, but there is a time and place for that and you don’t want it to consume you or them. When you are around your loved ones, try focusing the attention on something other than your illness or pain if you can. If you are asked by someone how you are doing and you don’t want to get into it you can simply say “I’m fine thanks”, and then redirect the conversation to something else. Even if you aren’t feeling well on that particular day, it is important for you to have things in your life to focus on other than your pain or illness. This will help distract you from your pain or illness, at least for the time being, and will bring a sense of normalcy to your life.

Is there anything else you have done which has helped you feel like less of a burden?

Is It Time To Break Up With Your Doctor?

When you have a chronic illness or chronic pain, it is crucial to have a competent doctor who you trust to manage your care. Many of us have been in a doctor-patient relationship that just wasn’t working out. But sometimes knowing when to call it quits can be difficult. It means starting over which can be scary. It may be easier and more comfortable to stay in that unsatisfying doctor-patient relationship for the time being. But is that really what’s best for your health? Here are 10 signs that it may be time to break up with your doctor:

1. He/she doesn’t seem knowledgeable about your illness or pain. Just because they are doctors, that doesn’t mean they know everything about every condition. If your doctor doesn’t seem to have enough knowledge about your illness, find someone who does. Finding a doctor who is an expert in your particular illness can mean faster progress in finding the right medications and therapies that will work for you.

2. He/she doesn’t answer all your questions. You are not supposed to be the expert in your condition, your doctor is. It is their obligation to answer all of your questions so you have all the information you need in order to make the right decision about which options for your treatment work best for you.

3. You can’t get an appointment in a reasonable amount of time. Sure doctors are busy. But that doesn’t mean you should have to wait a month for an appointment, especially if you are not feeling well and need to be seen soon.

4. He/she doesn’t hear what you are saying. You know your body better than anyone and you know the symptoms you are experiencing. You know if you are or are not feeling better on a medication. You know if physical therapy is or isn’t working. It is your doctors’ responsibility to listen and discuss your treatment with you and if something isn’t working, to discuss alternatives.

5. Your condition is not improving. Many conditions require trial and error in treatment. If you are not improving on one medication, it may be time to try another. If your doctor doesn’t agree with this, look for someone who does.

6. He/she spends more time writing notes than looking at you. Having a doctor who shows he or she cares about what you are dealing with is so important. A good doctor sits, makes eye contact, asks questions, and listens to your answers to work out a diagnosis and treatment plan.

7. You don’t trust him/her. When you have chronic pain or a chronic illness it’s crucial to have a competent doctor in charge of your care. If you don’t trust your doctor, your instincts are probably correct and it is time to find someone you do trust.

8. He/she doesn’t explain his/her treatment plan. Treatment is not one-size-fits-all, especially when dealing with chronic pain and chronic illness. These are often complex problems and what works for one person may not work for another. Treatment options may be confusing and require choices from you that entail thinking about what would be best for you at that time in your life. Therefore, you as the patient must be informed about possible treatment options and your doctors plan for the immediate future as well as possible long-term options so you can make an informed decision.

9. You can’t reach him/her outside normal business hours. What happens if you have a question that is emergent but not so serious that you want to go to the emergency room? Most great doctors will have an after-hours doctor on staff or a way to be paged if needed. If this is something you feel you may need and your doctor doesn’t offer this, it may be time to find someone else.

10. Your doctor or the staff does not return phone calls. There’s no excuse for not receiving a call back from your doctor or their staff within a timely manner unless you have told them it can wait. They should call you back because it’s the right thing to do, especially if you are experiencing symptoms or have a question that requires a timely response.

10 Inspirational Quotes For Those With Chronic Pain and Chronic Illness

Living with a chronic illness or chronic pain can be exhausting. It can be frustrating, stressful and infuriating and there may be many times when you just want to say “I give up”. Sometimes we need inspiration. A little something to hold on to that will help us to keep going. I hope these quotes will help some of you during those times.

1. You are more than your circumstances.

2. Don’t let what you can’t do interfere with what you can do.

3. Don’t be ashamed of your story. It will inspire others.

4. Today I will do the best I can and my best is good enough.

5. Courage is not having the strength to go on; it’s going on when you don’t have the strength.

6. I will choose to see the good in life.

7. We are challenged every day! We overcome every day! We are warriors!

8. You have dealt with so much and done the best you can. Take a moment to appreciate how strong you are!

9. No one is ever too broken, too scarred, or too far-gone to create change. Never stop fighting. Never lose faith.

10. Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow’.

10 Things No One With a Chronic Illness Wants to Hear

Those of you who have a chronic illness know what I'm talking about. Those well-meaning people just trying to help. But sometimes those well-meaning people don't realize that we don't need or want suggestions or thoughts, we just need their support. Here are 10 things not to say to someone with a chronic illness.

1) It’s all in your head.

2) Maybe you’re just stressed.

3) Have you tried holistic options?

4) Maybe it’s your diet.

5) Have you tried exercising?

6) You don’t look sick.

7) But you’re too young to be sick!

8) Have you tried getting more sleep?

9) Maybe you should try__________.

10) I’m sorry.

What else have you been told that you would like to add to the list?

How Can Psychotherapy Help with Chronic Pain and Chronic Illness?

Although pain is a natural function of the human body, millions of people experience pain that is chronic, debilitating and that interferes with their daily lives. The same can be said for illness. Everyone gets sick here and there. But there are millions of people who suffer from chronic, sometimes invisible, illnesses that can be incapacitating.

If you ask anyone who experiences chronic pain or illness, you will find that, for most, dealing with chronic pain or illness means not only physical burdens, but mental burdens as well. It may mean not only unrelenting doctor visits, procedures and/or surgeries, but also difficulties with employment, an inability to engage in once enjoyable activities, anxiety about the future, friends and family who do not understand, etc. The list goes on.

So how can psychotherapy help you with your chronic pain or chronic illness?

Many individuals with chronic pain or chronic illness grieve for the life they once had and the person they once were. This grieving process is normal and it is a very important part of learning to accept ones condition. Psychotherapy can help you through this process by helping you deal with the anger, frustration, and loss that often accompanies chronic pain and chronic illness. Psychotherapy can also teach you coping skills that will help you minimize the stress, anxiety and depression you may be experiencing and move toward acceptance.

Chronic pain and chronic illness can change a person’s thought process. The once cheerful, outgoing, positive person may find themselves feeling sad and negative, isolating themselves and unable to enjoy life. Psychotherapy can help you identify and adjust negative thinking patterns so that you are able to focus on the positive aspects of your life, redefine who you are, and make accommodations in your life that will help you reestablish a sense of self control.

Having chronic pain and/or a chronic illness can often make you feel isolated from friends and family. Not only do they not understand what you are going through, having chronic pain or a chronic illness often makes it hard to engage in social activities. It may make it difficult to complete household chores, which can be frustrating to you and your significant other. You may find it difficult to talk about anything other than your chronic pain or chronic illness with your friends and family because it is always on your mind. Psychotherapy can help you learn to pace your activities and chores which will help you accomplish your goals, it will help you with the anxiety that often accompanies social activities, and it will help you learn to deal with the constant ruminations about your illness that make it so difficult to think about anything else.

Many people suffering from chronic pain and chronic illness have difficulty sleeping. It has been proven that lack of sleep exacerbates pain. Therefore, adequate sleep is extremely important. Psychotherapy can help patients with sleep hygiene, which involves developing or redefining a bedtime ritual, relaxation techniques, thought stopping techniques, and identification of environmental factors that may contribute to difficulty sleeping.

If you can relate to anything I have talked about above, don’t hesitate to seek help! It can help you gain back your self-control and begin enjoying life again!

How To Combat The "Why Me's"

If you have a chronic illness or suffer from chronic pain, you have no doubt asked yourself “why me?” at least once…or more likely, a hundred times. I know I have. This question usually comes when you are not feeling well, when things aren’t going as you planned, or when you are in pain. It is something that is hard to move past. It can be frustrating and all-consuming at times. It can be depressing and can provoke anxiety. Here are a few tips that I hope will help.

1. Learn to accept that you may never get an answer. For the majority of us, there is no answer to “why me?”. Unfortunately sometimes things just happen. Acceptance doesn’t necessarily mean “it’s okay”. I’m not asking you to say that it is okay that you have an illness or pain. When I talk about acceptance, I mean being able to make necessary adjustments in your life, learning your new normal, and learning that despite your chronic illness or pain you can still be happy. Learning to accept that you may never get an answer to why this happened to you will be a process. It is not something that will happen overnight. You may want to resist it and that’s alright. It is not fair that this happened to you but with some hard work, dedication and a little reorganization of priorities, it is possible to be happy and to accept not having an answer to “why me?”

2. Find meaning. Ask yourself what good could come out of your situation. I guarantee that if you are open to that question, if you take the time to think about it, and if you are honest with yourself, you will likely come up with at least one positive thing that has come out of all the bad. For me, the meaning in my situation is that I am able to counsel others with chronic illness and chronic pain. It is what I love to do and I have been able to take my own experiences and knowledge and help others. For you it doesn’t have to be something as big as a career decision. It may be something as simple as the fact that you now have more compassion for others, you don’t judge people as quickly as you used to, or that your illness or pain has taught you to appreciate the small things in life.

3. Find a passion for something. Try to focus your attention on something other than “why me?”. Find a hobby or a passion that will make you happy and take your mind off of “why me?”. It is okay if the question comes into your mind once in a while. When it is constant or interrupts your quality of life, your focus, or your happiness, that is a problem. Finding something that brings you joy will help you to cope.

4. Find support. You are not alone. As I stated above, the majority of us with a chronic illness or chronic pain have asked ourselves “why me?”. If you find that you are having difficulty with this question, find support, either with friends, family, a support group, or a therapist. Talking about what you are thinking and feeling can help greatly.

My Invisible Illness is Real

Most people who have an invisible illness (a chronic medical condition that shows no outward signs) have experienced these words at one point and time: "But you don't look sick." These words can be extremely frustrating. I often ask my clients, "What is the most difficult thing for you about having (Crohn's Disease, ulcerative colitis, IBS…)?" I can't tell you how many times I have heard the answers "It's hard to talk to people about what I'm going through because they tell me I don't look sick", or "My family doesn't always believe how bad I feel because I don't look sick", or "I've been told it's all in my head". I could go on. This is one of the difficulties those of us with chronic illnesses need to learn to overcome. The idea that people don't believe us because they cannot see our illness like they can see someone in a wheelchair or a like they can hear a chronic cough can feel isolating and depressing. Sometimes it can make us feel like maybe it really is in our heads. Maybe we aren't really as sick as we think. Instead of giving in to this, we need to fight back! Understand that these people aren't saying these things to be insensitive. They just don't get it. So educate them! Explaining to them what you are going through and why you don't look sick will not only educate them on something they are unfamiliar with, it can be empowering for you too. Also, trust yourself. You know how you feel. You know your illness. You know that it is not in your head. It is real.

The Importance of Choosing the Right Doctor

I have been thinking about this topic for quite some time. Not only have I recently had clients question their choice in doctors, I have been thinking about how lucky I am to have the team of doctors I do. I quite literally owe my life to my colorectal surgeon and his team as well as my gastroenterologist. I have complete trust in them and know they have my best interest at heart. That is very comforting.

When you are living with a chronic illness or chronic pain, choosing the right doctor can make all the difference in your treatment. So, with all of the doctors out there, how can you be sure you have chosen the right one for you? Here are some tips:

Do your homework: If you are searching for a doctor, make sure you do your research! Check out healthgrades.com, vitals.com, and other sites where patients can post reviews. Also, don't be afraid to make an appointment to interview potential new doctors. Ask the doctor any and all questions you need answers to in order to make a decision about who would be the best fit for you. If they value you as a potential new patient, they will take the five or ten minutes necessary to answer your questions.

Choose a doctor who specializes in your condition: If you have gastrointestinal issues, choose a gastroenterologist. If you have chronic pain, choose a doctor who specializes in pain management. You get the idea. I cannot express how important it is to have a doctor who specializes in the specific illness you are struggling with. General practitioners can be great for common colds, flu's and that sort of thing, but when you are dealing with something specific, such as Crohn's Disease, arthritis, chronic pain, etc. you need a doctor who knows everything possible about your condition.

Trust your instincts: If you have been seeing a doctor you are not happy or comfortable with, find another doctor! I know this sounds like common sense but I can't tell you how many clients I have seen who have stayed with a doctor they are unhappy with. To some degree I understand. Doctors are seen as authority figures so sometimes we question our own instincts when we feel uncomfortable with a doctor. We think it must be something within ourselves, not something with the doctor. Please know that if you feel that something isn't right or you are not getting the treatment you deserve or need, you are probably correct. Trust your instincts. Your health and happiness are on the line.

If you aren't sure, get a second opinion: If you have received a diagnosis you are unsure of or your doctor is recommending a procedure or surgery you are not sure you need, get a second opinion. The worst that is going to happen is that the second doctor will agree with your doctor. At least you will then have the peace of mind you need to move forward.

Ask your peers: If you are looking for a doctor, don't hesitate to ask people you know for a recommendation. You can also research Facebook groups or other online forums dedicated to people with your illness and ask individuals there for recommendations. Hearing the good, the bad, and the ugly from actual patients can be the best way to find a new doctor.

Raising Awareness About Lupus

Recently I was contacted by a representative of Healthline, a fantastic medical website which offers information and resources on just about any illness or medical issue you can think of. I highly recommend you check it out. The reason I was contacted was because their goal this year is to raise awareness about Lupus, a chronic autoimmune disease that can affect any part of a person's body. The representative who contacted me was hoping I would help them raise awareness. Of course, I jumped at the chance. First of all, it is my goal to raise as much awareness about chronic illness and chronic pain as possible. Second of all, I have been dealing with chronic illnesses since I was 18 months old and I know how empowering education and resources can be.

When I was 18 months old, I was diagnosed with Juvenile Rheumatoid Arthritis. It went into remission when I was six years old and came back when I was fifteen. At that time it was difficult to control my symptoms, so my rheumatologist wanted to test me for Lupus. I remember being so afraid of that word and what it meant. I didn't have a great understanding of what Lupus was. All I knew was what I had seen from a woman on T.V. who had Lupus. She said that she was extremely tired all of the time and that she was in a lot of pain. At the time, there was not a lot of information available about Lupus. I wish I had a resource like Healthline. It would have made that possible diagnosis a little less scary. If you or someone you know has Lupus, or you think you may have Lupus, please check out this link:

http://www.healthline.com/health/lupus/effects-on-body

It is a virtual guide of the symptoms of Lupus and how it affects the body. It's a great resource.

The Brain-Gut Axis...Part 2

I found this page today while doing a little browsing “Five Hot Topics in Inflammatory Bowel Disease Research”. http://theibdimmunologist.com/5-hot-topics-in-inflammatory-bowel-disease-research. If you take a look at number 4, it says “The Brain-Gut Axis”. This is the same thing as the Mind-Gut Connection I talked about in an earlier post. While I was very happy to see that this is one of the “hot topics” in IBD research, I was a bit surprised. I can’t tell you how many GI doctors, nurses, other medical professionals I have contacted to tell them about the importance of looking at the psychological effects of IBD as well as the importance of preparing patients psychologically for surgery. I’ve told them about the services I offer, in terms of counseling, speaking and support groups. While some of these doctors understand the importance of the psychological component to these illnesses, it seems that most of them either don’t understand, don’t believe in it, or don’t want to take the time out of their busy schedules to learn about how psychological help may benefit their clients.

I believe there is truth to this “Brain-Gut Axis” and I think it needs to be taken more seriously in the medical community and that it needs to be mentioned to patients. Referrals need to be offered if needed. After all, how would patients, especially new patients, have any idea how much their psychological state could affect their disease course or management. I guess my question is, how can we make this a regular part of IBD treatment? Any ideas would be welcomed.

Get Motivated! 10 Tips That Will Help You Reach Your Goals

At times, having a chronic illness can make it hard to stay motivated to reach goals. Some days you may not feel well enough. Other days you may think “what’s the point if I’m always going to be sick?”. Below are 10 tips to help you stay motivated to reach your goals.

1. Start with one goal: Often times it’s hard to get motivated because there’s just too much going on. When there are a million things going on in your life and five different things you want to achieve, it’s very hard to remain focused. Write down your goals and then prioritize. Choose one goal to work on and focus only on that goal. You will achieve your goal quicker and it will be easier to stay focused and motivated if you work on one goal at a time.

2. Start small: Once you have chosen the one goal you are going to focus on, write down baby steps you can take to get there…and I’m mean BABY steps. Start very small. It will be easier to continue to be motivated if you start small and are able to see your successes.

3. Recognize small successes: Each time you complete a small step toward your larger goal, recognize it and be proud of yourself! Recognizing that you are completing the steps necessary can be very motivating because you will see that you are getting there!

4. Set a timeframe for completing your goal: Think about what an appropriate, realistic timeframe would be for completing your goal and mark it on a calendar in red. Look at that day on your calendar regularly as a reminder and as a motivator.

5. Find inspiration: Whether it is from someone you know who is already doing what you are working toward, reading information online, reading blogs, books or magazines, finding inspiration to reach your goal can do a lot to give you a boost of motivation.

6. Remind yourself of your goal: Make a poster with a short sentence describing your goal or simply write it on a piece of paper in big letters and tape it up where you will see it every day; on your mirror, on your refrigerator, on your desk at work…you get the idea. It’s hard to ignore it when it’s in your face every day.

7. Tell people about your goal: Whether it’s just one person or a whole bunch of people, telling people about your goal will make you feel accountable, which in turn will help to motivate you to succeed.

8. Get support: If you have a friend or family member working toward the same goal as you, talk to them about doing it together. Having a buddy makes accomplishing a goal easier. You can rely on each other during the times you are each feeling less motivated and you can celebrate together when you have reached small milestones. If you don’t have a personal friend or family member working toward the same goal, look online for any support groups that may be out there.

9. Create a routine: Make accomplishing your goal a part of your daily or weekly routine. For example, if getting in shape is the goal you are struggling with, dedicate yourself to exercising on specific days of the week at the same time on each of those days. While it may be a struggle at first, once you get into a routine it will be easier to stay motivated.

10. Replace negative thinking with positive thinking: Instead of thinking “I will never be able to do this”, think “I can do this and I will do it!” Make an effort to recognize your negative thinking patterns and make a real effort to turn those around. Negative self-talk will make it ten times more difficult to stay motivated and reach your goals.