Chronic Pain by Guest Blogger: Dawn Elder Kelly, MA, NCC, LPC

"My disabling chronic pain is more real than your imaginary medical expertise!"



When I first thought about how I wanted to write this article, I nearly panicked. I thought as a chronic pain patient myself, "Holy cow!!! I don't even know where to start because I don't get most of the support that I need from my own family at this point, so how am I going to help others get the support that they need?"

Then it hit me, what better way to help others in chronic pain than by expressing what I need in forms of support from my family and also by sharing the experiences I have had with the individuals in my life who have been ignorant to chronic pain and who have just flat out refused to try to accept it or learn more about it in order to help support me over the years. I know for a fact that all chronic pain patients have gone through tough times with their families to some extent. Its important that they all know they're not alone! Not getting the support that I need has only fueled me to find out more about the things that I do need from my family in order for me to continue this battle on a daily basis while having healthy relationships with them.

My Chronic Pain Experience In a Nutshell

Ten years ago, I developed chronic daily persistent headaches with intermittent migraines for no apparent reason. On top of having daily head pain, three years ago I was diagnosed with a painful bladder disease called Interstitial Cystitis. I ended up losing my bladder due to the disease, but I then developed a different type of chronic pelvic pain due to complications from the surgery.

As if I wasn't feeling bad enough physically, I was told by a couple family members that I stressed my mom out so bad as she tried to help me get better, that I was responsible for her getting cancer and for her losing her life. That was the toughest thing I have ever had to swallow and I still haven't fully recovered from those words . I thought, "how in the world could they actually say something like that to me?" It was because they chose not to invest any time in educating themselves about my conditions to better understand what a day with my pain is actually like for me.

I have also heard from people that I have done nothing but "take advantage of my husband" since we've been married because I haven't been able to work the past several year,s and he has had to help with many things at home when I am unable to do them. I've also been told that "I made the choice to have chronic pain" and that "I should just tough it out". Last but certainly not least, being told "well, you look great, so you must not be hurting that bad!" is certainly not a compliment!

So the question is, how do we help our families understand and support us? 

It's not as simple as pointing the finger and saying, "Well you need to do this and you need to do that." I've learned that we as chronic pain sufferers have responsibilities to fulfill as well. If our families see that we are doing everything we can to physically and emotionally be well, it may be easier to get them to do their part.

The Physical and Emotional Effects That Occur When Pain Becomes Chronic

For everyone seeking relief from chronic pain, other people in their lives are inevitably affected. This includes husbands and wives, parents and children, friends, employers, and coworkers. Chronic pain can interfere with every aspect of a person's life from work to relationships, to one's self esteem and emotional well being.

When the injury or disease first begins, family and friends are often there to help the pain patient offering all kinds of support. But as the pain starts to persist for weeks, months, and then years, family and friends frequently become withdrawn, resentful, judgmental, frustrated, angry, and emotionally exhausted. These negative responses are often heightened as the pain patient withdrawals themselves from society with a complete sense of hopelessness and helplessness.

As with many pain patients, there is a stigma attached. We are often told that the pain isn't real, that it's all in our heads, or that we're faking it to take advantage of others and to get sympathy. Saying such things further drops the pain patient into a downward spiral of hopelessness and magnifies the existing pain syndrome. The misjudgments and assumptions made by others also complicate the anxiety and depression a lot of pain patients have developed due to the constant pain.

Communication Must Go Both Ways

The most important component to a healthy pain family is…COMMUNICATION! Everyone involved needs to express their feelings openly and honestly with each other. Family members need to hear from the pain patient what they need in terms of support and the family members need to express their feelings with the person in pain so that the communication is going both ways.

Pain patients often feel like they have to carry the burden of proof, that it's not psychosomatic and they truly are in pain. They are often misunderstood because there may not be an amputation, a cast, or any external "proof" of pain. This can lead to feelings of resentment and anger for the pain patient.

There may also be a tremendous amount of guilt over medications, inability to contribute financially, and the inability to enjoy physical activities at times. In some cases family members think the pain patient is "working it", or faking their symptoms for other gains. In all of these situations, the person in pain must communicate, "You know, it's really not helpful to me to have you disregard my situation". The pain patient may also want to let family members know that they are free to ask him or her questions about their illness to clear up any doubts that they may be having.

On the flip side, the family member may feel helpless because they can't relieve their loved one's pain and they may feel guilt for having negative feelings or thoughts or for blurting out unsupportive words or actions. To balance this, it's important for the family member to be upfront with the person in pain and admit any feelings of guilt or resentment and to discuss those feelings with him or her.

If the pain patient's spouse or loved one has cut off all emotional support (which may include not being affectionate, not providing optimism when he or she is feeling their worst, shows no interest in how his or her appointments go, or shows no interest in learning about their condition to better understand it) the individual in pain needs to communicate to their loved one by saying "I feel as though you have become emotionally distant by not doing…" or, "In order to better understand my condition and what I go through, would you be willing to educate yourself about my pain syndrome?"

If the pain patient doesn't speak up, the spouse or family member usually doesn't think there is a problem from the pain person's standpoint. They often see it as a one way street where the pain patient and his or her actions resulting from the pain is the only problem in the relationship.

If family members are feeling angry or frustrated because they feel the person in pain is not doing all he or she can, then they need to discuss this with the pain person. If the person in pain is truly doing the best he or she can, that needs to be conveyed. If the pain patient thinks there are things that he or she knows they can do better, they need to make every effort to do those things and tell their loved one that they will try harder. Sometimes this can be very overwhelming and difficult for the parties involved. It may be very beneficial to get involved with a pain psychologist who can help each individual understand the other's feelings and who can help educate the family on chronic pain.

If nothing is said from either party, the anger, frustration, and assumptions will continue to build and the relationship will become unhealthy and toxic. Love, commitment, and mutual respect are how all parties involved need to cope with a chronic illness. Chronic pain patients need their families to be open minded and nonjudgmental.

The Flip Side: An Enabling Family

There are families that disregard the pain patient, but there are also families that enable the person. Either end of the spectrum is unhealthy. If the person in pain states, "I'm going to get a drink", and the non-pain family member says, "No, don't move I'll get it," the pain patient needs to make it clear that it's not helpful to do everything for them. The person experiencing the pain needs to do as many activities independently as possible. The healthy loved one should encourage activities in the relationship.

The Chronic Pain Patient's Physical Responsibilities For Increased Functioning

One of the pain patient's most important roles in his or her relationships with family and in their own recovery, is to focus on restoring function and reducing self limiting behaviors, or "pain behaviors." Often the person in pain thinks they can't do something because it will ultimately cause more pain. This is natural; however, there's a difference between hurting at the same level regardless of whether one is active or not active and doing something that will cause physical damage.

With proper treatment modalities in combination, the pain patient can begin to figure out what they can do and what their true limitations are. They will begin to realize the value of engaging in activities even if it's going to hurt. Pacing their activities will ultimately make the person in pain feel better about themselves because they will ultimately be able to do more. If the chronic pain body is pushed to do too much at one time, more pain and exhaustion may be the result.

Exercise and physical therapy are crucial aspects for strengthening the chronic pain body and for producing natural endorphins. The more there is pain, the more likely the person is to be inactive which leads to more pain and muscle weakness and atrophy. This cycle must be broken and will be very challenging for awhile, but will become easier as the body gets used to being active again despite having pain. But again, pacing activities is a must! When I say exercise, I don't mean to try to run a marathon! I am referring to light walking, housework, or whatever can be done to move your muscles!

Other Responsibilities That the Pain Patient Must Consider

The pain patient needs to focus on eating fresh whole food to obtain the vitamins needed to regenerate new cell growth. Another important issue is getting 15 minutes of sunshine a day or two hours of sunshine a week which will provide adequate amounts of vitamin D. It is a proven fact that those in chronic pain tend to have low levels of vitamin D. If sunshine is not an option, vitamin D supplementation is important.

People in pain need to get plenty of restful sleep. A body in pain uses up vital energy that needs to be replenished through good sleep habits. If resources such as chiropractic care, massage therapy, or acupuncture are available, they are extra modalities that can be tried to get relief.

Finding a passion whether it be through a hobby, writing, sports, work if possible, or volunteering is necessary for mental well-being. It gives the chronic pain patient a sense of fulfillment, purpose and is a source of joy and inspiration. Engaging in relaxation skills, prayer, or mindful meditation will also offer amazing results for the body and mind. Remember, stress goes to the weakest identifiable part of the body…and in the chronic pain body, its going to be the site or sites of the pain condition.

Nurturing Positivity

It is so important that the person in pain surround themselves with positive people, places, and things. It's extremely difficult to think positively at times when one is in chronic pain. To overcome this, practice cognitive behavioral therapy. Learn to change maladaptive thinking and behaviors. Just knowing one is practicing healthy living creates positive thoughts. Again, the main topic of this article is helping family understand and support the loved one in chronic pain.

Communicating feelings and education will help build healthy relationships within the chronic pain family. If there is a relationship that needs to be repaired, the person in pain needs to step up to the plate and take the steps to amend it. If that's not possible because the other party refuses to educate themselves or refuses to try harder to offer support, then that must be accepted by the pain patient and the relationship may have to be terminated due to the toxicity it will create in the chronic pain body and mind.

Things NOT To Say To a Chronic Pain Patient

Sometimes people mean well, but what they say can be harmful without intending to. I came across a list of ten things NOT to say to someone with an invisible pain condition.

1. "Must be nice to sleep all day."
2. "You're lucky you don't have to work."
3. "I can relate."
4. "Just take something."
5. "Just try harder."
6. "Just be positive."
7. "You just want attention."
8. "It's all in your head."
9. "It could be worse."
10. "But you look good!"

Some other things I'd like to add to the list are, "But you had surgery, therefore you should be fixed," "If you can go to the mall, you can get a job," "If you can exercise, you must not hurt that bad," "How can all the doctors you've seen be wrong?" and "You must be doing this for the drugs."

If any of these negative connotations are conveyed to the chronic pain patient, he or she must let the person know that their comments are very belittling and hurtful. The non-pain loved one should also be asked to be more supportive and asked to educate themselves to grasp an understanding of the chronic pain person's condition and what a day is like for them. If they continue to be condescending and unsupportive, the relationship should be ended. For those who refuse to give an effort, I found the following quote to be helpful, "My disabling chronic pain is more real than your imaginary medical expertise!"

Simple Ways To Encourage the Chronic Pain Patient

As I was doing my research, I came across a simple list of five ways to encourage someone living with an invisible pain condition. If you are the family member of a chronic pain patient, I would like to suggest these statements which not only are positive, but acknowledge the person's condition in a gentle way:

1. "It's always great to see you! I know it's quite a sacrifice for you."
2. "I don't know how you do it. Your courage amazes me!"
3. "Given all that you have gone through, your attitude is incredible!"
4. "I keep hoping for a miracle, but I love you no matter what."
5. "I wish you could feel half as great as you look."

Even short statements like, "Things will get better," "We are in this together," "You are so strong and you can make it through this," and "You are doing a great job, I know this is difficult" can weave a touch of optimism in with your genuine concern. Of course, what may be helpful to one person may not be for someone else, so I encourage anyone with a chronic pain condition to find what works best for them and to communicate such examples to their loved ones.

Proof that Family Support Is Important

I want to share the following study that was completed at Harvard Medical School. It clearly proves the impact of family support on a more successful rehabilitation and recovery of those of us with chronic pain.

The influence of family support on chronic pain.

Jamison RN, Virts KL.
Department of Anesthesia, Brigham and Women's Hospital, Harvard Medical School, Boston, MA 02115.
Abstract
This study examined the role family support plays in insulating chronic pain patients from maladaptive behaviors associated with their pain. Two hundred and thirty-three patients who described their family as always being supportive and never having any conflicts were compared with 275 chronic pain patients who endorsed having family disharmony and limited support. One year after completing an out-patient pain program a random sample of 181 of these patients were followed to determine the extent to which family support influenced treatment outcome. The patients who reported having non-supportive families tended to have liability and work-related injuries, relied on medication, reported having more pain sites and used more pain descriptors in describing their pain. These patients also tended to show more pain behaviors and more emotional distress compared with pain patients coming from supportive families. On follow-up, patients who described their families as being supportive reported significantly less pain intensity, less reliance on medication and greater activity levels. They tended to be working and not to have gone elsewhere for treatment of their pain compared with patients who described their family as non-supportive. The results of this study demonstrate that perceived support is an important factor in the rehabilitation of chronic pain patients.
PMID: 2222385 [PubMed - indexed for MEDLINE]

Helpful Pain Websites

There are several websites where chronic pain patients and family members can go to for information.
I will include some of the general pain sites that are out there. I recommend that all pain patients also do their own research for sites that specifically deal with their particular disorders so that they can share them with their families to help them better understand what the person in pain is experiencing. Some websites are:
1. The American Chronic Pain Association- www.theacpa.org
2. The National Pain Foundation- www.nationalpainfoundation.org
3. The Chronic Pain Site- www.chronicpainsite.com
4. American Pain Society- www.ampainsoc.org
5. www.pain.com

Conclusion

As chronic pain patients, we need to do what's best for us in all situations. That includes taking care of ourselves the best way possible, physically and mentally, and helping our families to be more supportive and understanding. We can only do our parts. The rest is up to them! We can't change what has happened to us and we certainly didn't ask for it. All we can do is move forward and live one day at a time as best we can! There is a life out there to enjoy despite having chronic pain! We can have that second chance in life if we choose to take the necessary steps in all aspects of our lives. Be strong my fellow pain survivors and NEVER give up!

Dawn Kelly, MA, NCC, LPC


Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com 

Just Tell Me What to Eat!

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices^®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices^®: A Cookbook for Interstitial Cystitis and Overactive Bladder

For health care workers:  Interstitial Cystitis: A Guide for Nutrition Educators 

 **Please SHARE using the links below!**

My IC Story

Many people want to know my story, but to be honest, I have a hard time telling it still today, since it is easy to fall back into blaming myself for not getting diagnosed earlier. What I have to remember is that I didn't have the internet to research things and communicate with other patients around the world as we all can today. Anyway, here it is--raw and embarrassing as it may be:

I believe I have had IC since I was a teenager, but it took until I was 38 to be diagnosed. As a high school student I didn't understand why there was only 5 minutes between classes. Didn't everyone have to use the bathroom between classes? Honestly, I never thought I was different than anyone else. When I had my first "UTI" at 17, it never entered my mind that I could have been misdiagnosed. I was more embarrassed to have to talk to someone about what was going on “down there.”

One day, as a sophomore in college during an extraordinarily stressful time I went to the bathroom and filled the bowl with bright, bloody urine. I was panicked...went to the doctor later that day and by then, there wasn't anything was in my urine. They gave me antibiotics anyway, but I still felt like a fraud. At 19 I learned to keep this sort of thing to myself. (Now I know stress plays a huge role in my IC.)

When I got married, I ended up with "repeat UTIs" and the university clinic referred me to my first urologist. He completely mortified me when he called it "honeymoon cystitis" and then went on to say, "This sort of thing happens to you girls when you start to have sex with multiple partners." I was so paralyzed with embarrassment I couldn't even remind him that I was married--couldn't he see my rings? Didn't he read my chart? Again, I clammed up and didn't say anything for a long time.

Over the next 15 years I jumped from doctor to doctor, urgent care to urgent care every time I had a "UTI," partly because we moved a lot in those early years, but partly because I just couldn't risk the chance that I would be blamed in some way for something that I knew wasn't my fault. I was not assertive enough to stand up for myself--yet. Maybe if I hadn't done that, I would have been diagnosed sooner.

Finally, at about age 35 things got out of control, and I became nearly bedridden for two years. My kids were in junior high and high school age and it took all of my energy to get up in morning, do a couple of chores, work part-time and put dinner together. Often one or another thing got pushed aside because I was so sick and exhausted. My once organized home became a cluttered mess. My biggest grief was that I wasn't able to be the kind of mom I had been in the past. I couldn't get up early enough to make breakfast for my kids when they were in high school, I rarely volunteered at school anymore, and I had to say no way, way too often. I do have to say this, I made sure that I was always at "events" like ball games or concerts or ceremonies.

About that time, my family doctor, who is magnificent, started to suspect IC, and sent me to a urological clinic. Although my family doctor was on the right track, I got stuck with a urologist who "didn't believe in IC." At one point he blamed my husband for "giving" me something-what a mess. I was also put on long-term antibiotics, given anti-depressants (which, because I wasn't depressed, completely flipped my brain out), and subjected to urethral dilations. (I know now it probably made me worse).

The last straw came when I called my boss at 10 pm one night to tell him I couldn't open the office the following day. He was furious, even though I had never missed work. I calmly reminded him of all the extra time I put in the previous year when another dietitian's father was in the hospital for several months. He wouldn't hear of it. I had no choice but to quit on the spot. The good news was that I finally had stood up for myself, and the next day was when I began to really get help.

That morning, I camped out on the steps of the urologist's office before they opened. His nurses and assistants got there before him and hustled me into the office. Two or three of them got busy on the copiers, and another one told me "You are in the wrong place. This doctor cannot help you. Go to your gynecologist, rule out anything there, then if you need a urologist go see Dr. ****, he is the best for IC in Michigan." She gave me the new doctor's phone number, and the others handed me a stack of my records still warm from the copier. I left stunned, but stronger.

Today I am FOREVER grateful for those brave women who had the guts to tell me what their boss would not. No offense to the male IC patients out there, but I should have known months before that I was seeing the wrong urologist when week after week I was the only female patient in the waiting room. Doctors who really know IC usually have a fair amount of IC patients mixed in with the vasectomy and prostate patients. :-)

The rest of my story is uneventful, except that it still took another year of tests and doctor appointments to get the true diagnosis, and still another few years to get me on track with the right medications and lifestyle changes. As I say in my books, even as a dietitian, I was very much in denial about the interaction of food with my symptoms for a long time, but eventually I was able to add a lot of foods and certain beverages back into my diet.

In some ways I think IC changed me in very positive ways. I am much more assertive and don't take bad medical care lightly for my family or me anymore. I have learned to cherish and enjoy the time that I feel good. I probably accomplish much more these days because I don't waste time on meaningless activities.

I also prioritize the people in my life better than I ever did. I practice stress management, make sure I get plenty of sleep, and I don't waste my time with people who don't understand my illness. These "toxic" people can drain all the energy out of you and actually make you sicker. I DO spend a lot of time with my family, and try to never take that for granted. I have to say, that without exception, my kids survived their teen years of having a "sick" mommy, and they are all amazing, compassionate, loving adults.

Finally, whether this is a road I would have chosen or not, I believe now I got sick for a reason; that since I have the unique experience of knowing food and IC, I am able to help thousands of other people who do not know where to begin with the puzzle of the IC Diet. I have visited IC support groups all over the country now, and have counseled people from Maine to California on the IC Diet. Frankly, I wrote the books because I couldn't be everywhere at once, and although some people couldn't afford my consultation fees, most could afford a paperback book.

Thanks for letting me share my story with you. It is interesting how so many elements of my story parallel other IC patients. Maybe someday we will be able to streamline the diagnostic process, and fine-tune the treatments available. Until then, we have to lean on and learn from each other.


Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com 

Just Tell Me What to Eat!

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices^®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices^®: A Cookbook for Interstitial Cystitis and Overactive Bladder

For health care workers:  Interstitial Cystitis: A Guide for Nutrition Educators 

 **Please SHARE using the links below!**