Author Archives: Terry McDonald

The most common complaint I, as a psychologist, hear from chronic pain or illness patients is not, “why me?” or “poor me” but rather “other people just don’t get it.” And, often the hardest part is that the people to whom the patient has felt closest to previously are often the very ones who ‘just don’t get it.’ This can include immediate or extended family members, co-workers/ colleagues, or friends. It often includes primary care physicians, as well.
Additionally, being part of a not-well-known or rare chronic illness population has a lot of very real medical and life challenges. Being misunderstood can lead to even more frustration and feelings of loneliness, low self- esteem or depression.
Because of the groundbreaking work of the IPPF and its primary focus on patients, there is a pemphigus/pemphigoid (P/P) community, and no one has to feel alone again. But, because they are rare, P/P isolates patients from the people they spend most of their time with — and those people don’t fully understand. Simple comments or true answers to “how are you feeling?” can be misconstrued by some as incessant complaining. Others don’t want to hear about it. If someone looks okay, they must feel okay. Right? In a word, “No.”
How should people with chronic pain or illness present themselves in order to achieve an understanding from others around them? There is no “correct” answer that works for everyone. But there are choices. And different choices will work better in different situations. If someone is in a wheelchair, using a walker, limping, or having breathing problems, for instance, they will be seen as handicapped or sick.
Most people do not want to be seen as sick, but being seen as totally well, while suffering the debilitating symptoms of P/P, has expectations. If you are not sure where you stand on this, there is an easy way to determine your position.
Draw a horizontal line on a piece of paper: On the far left end write “human being”; in the middle write “human being with a (or several) medical problems”; on the far right, write “walking disease.” You can then think about 1) where you see yourself on this continuum, and 2) how you want others to perceive you. This is an exercise that can be done daily, weekly or any way that helps you. Don’t be surprised if it changes over time. It will affect your mood. It will also affect the way you both “think” AND “feel” about yourself and others. Also, be aware of how YOU perceive yourself; this will directly affect how others perceive you — unless you are a very good actor.
As someone with multiple autoimmune diseases, I sometimes hear disconcerting comments from colleagues and professionals who I suspect actually know better. One colleague I respect, scratched his bearded chin a few years ago and said to me, “Do you know what your problem is? You don’t look as sick as you are.” How does one respond? Whose ‘problem’ is it exactly? It was more than a comment; it was a total misunderstanding of my world.
All I said at the time was “Thank you.” It seemed clear to me that a true response/explanation would take more energy than I wanted to expend. I also didn’t think this person would understand or that he really wanted to at that time. I had to let it go and move on. This caused some more chin scratching on his part. The comment all of us hear is, “ You look good; you must be feeling better.” Where is there a direct link between how chronic illness patients look and how they feel?
These people mean well, which makes the situation difficult. I usually don’t bother to explain things; I do when there is a sincere concern or interest on their part. I don’t want to waste any energy; it is a personal choice. For me, carrying around cards with the IPPF website has been the right choice. I can easily hand it to someone. The ball is now in their court, and they can decide whether or not to take the next step.
Because of my particular profession, more people I know tend to look it up; however, most people will never bother. I am actually fine with it since I have no expectations they will take that next step.
And, I absolutely do not want to look sick. Being understood is always better than being misunderstood, but why would anyone actually want to look sick? Well, believe it or not, there are people who thrive on being ill and helpless. Sometimes it is because of a “Dependent Personality Disorder”, and sometimes it can go back to having had “special” treatment when ill as a child. What are the criteria anyway?
I can have a bit of a “Far Side” sense of humor, and I love to observe other people’s reactions. I tend to listen more than talk. Since I lose my voice easily, this is probably a positive thing for me! I often assign people the task of being a “participant observer” in uncomfortable situations. This can be an eye-opening experience.
Letters and comments that I receive from people and many patients I meet at meetings and presentations say that this is the hardest part for them on an emotional and psychological level. I often ask how they themselves feel when they see someone “who looks totally healthy” using a handicapped space; this is something most people can relate to at some level. This is how others view a chronically ill person with invisible symptoms.
An excellent story and innovative (copyrighted) rationale can be found at: www.butyoudon’ theory. It is about one woman’s spur of the moment way to explain to a good friend who wanted to understand her illness, but could not.
At our upcoming Annual Patient Conference in Chicago (last weekend of April 2014), you will have the opportunity to see and talk with both expert professionals and others going through physical and emotional changes. You will learn how others have not only coped, but also flourished.
And don’t forget, you can always ask your Peer Health Coach, the Email Discussion Group, or the IPPF Forums and someone will help find an answer for you.
As I am writing this, I am trying to hold onto a delicate balance of my clinical psychology practice and a special birthday party/fundraising event. The expression “it is better to give than to receive” means much more to me, and when I see a window of opportunity, I go for it.
Normally, I skip having an actual birthday party, opting instead for a small group of close family and maybe a few friends, a casual evening, and cake. This year was different.
Initially I considered a nice vacation for my husband and me because this birthday was a bit of a landmark for me, and I did want to do something special. However, the more I thought about it, the more I realized that I really wanted to celebrate the fact that I was still alive. This reason was more evident as I recalled the past 12 years and my diagnosis with two very rare autoimmune diseases, amidst the losses of my parents and some family and friends. The question was: How could I celebrate my special birthday and life, AND use this as an opportunity?
A seed was planted.
When we think of planting seeds, many people immediately think about the Spring. Here I am in early mid-Fall having my “a-ha” moment. Interestingly enough, my favorite flowers have been tulips since my first visit to The Netherlands more than 40 years ago. Unlike most flowers, tulip bulbs are planted in the Fall and then come up beautifully in the Spring. I love how these flowers normally bloom earlier than most, and at night or in darkness, they close to protect themselves, reopening when it is once again safe.
A seed was beginning to metaphorically grow in my mind. Why not use my birthday to have a special party/fundraiser/event where guests would be asked to not bring me a personal gift, but rather contribute to a charity of my choice?
Great! Now I was going to have a big party and not just a small, intimate gathering. What would be my first step?
I began to assemble a list of family, friends, acquaintances, colleagues, and the physicians who have been helpful during my journey. The list was a lot longer than I expected.
I kept going through the list. I couldn’t find anyone I didn’t want to include in my celebration. And to compound the issue, I found myself adding more and more names. I even added some out-of-town people, including my life-saving physician, Dr. Razzaque Ahmed from Boston. My original dermatologist in Pittsburgh, Dr. Judy Small, had worked closely with Dr. Ahmed over the phone during the first six years of my treatment (until I had to change doctors because of insurance and facility/provider changes). How could I have a celebration of LIFE and not invite the doctor whose ‘alternative’ treatment of IVIg was the reason I was alive? Remember, IVIg was very controversial back in 2001.
Since it was for charity, I was willing to go that extra mile. I am not sure I was using my old and trusty cognitive model — without emotional interference — but I was determined to stay on track. Finally, I decided on a private club where a dear friend (and a Vice President at PNC Financial Services, a 2012 Annual Meeting sponsor), had generously offered to sponsor my birthday event.
I enjoyed creating the menus, invitations, and RSVPs. Thanks to some technical help from my husband, everything got printed and mailed. Will Zrnchik, our CEO, set up a special Web page for the party so people could donate online.
The RSVPs started coming in and more people than I expected were planning on attending! This was getting big. What about entertainment? I realized I know a lovely and accomplished young woman who is the founder and creative director of a local ballet company whose studio was originally leased to Gene Kelly before he went to Hollywood! She had choreographed a perfect piece just for my celebration that could be performed by two ballerinas.
This effort took a lot of time and effort, but it was a night to remember. The party brought together people who did not know each other, and might not see each other again, but who kept telling me they had been at the “fun” table. The funny part is they were all at different tables!
I was blown away by Dr. Ahmed’s attendance and the speech he gave to educate the important people in my life about the seriousness of my particular diagnoses (many were not aware of my conditions). Even my normally quiet, engineer-minded husband gave a very beautiful and emotional toast in my honor. I swear that if I didn’t also have Sjogren’s Syndrome I would have cried my eyes out!
Many of my guests asked me to make it a yearly event! While flattered, it probably won’t happen at the level of this one, but I will definitely have smaller cocktail-like parties at home and continue to request donations in lieu of gifts.
It feels so wonderful to have both a landmark birthday and a memorable evening and celebration with friends and family who donated to IPPF. The reality is anyone can do this on their own comfort level.
The bottom line here is from that original “seed” came an evening I will never forget and will help others because of generous donations. The icing on the cake is most of my doctors got to meet each other face-to-face for the first time. And, it looks like Dr. Ahmed will be invited to talk to Pittsburgh doctors, residents, and others in the near future with a hope that it could drive some to study and research pemphigus and pemphigoid.
I am thankful to the generous local merchants who provided many items, services and gift certificates for the Silent Auction.
Knowing that this fundraiser can be repeated in small ways over the coming years gives me far more happiness than any one-week vacation could possibly have given me. I am not special for having planned this event, but I get a warm and wonderful feeling just knowing that I was able to embrace a new way of giving. I can absolutely validate that it is far better to give than to receive.
If you have an idea, let that seed evolve. See where it takes you. We can find new ways of giving — whether with special skills, money, frequent flyer miles, volunteering time and services for one of the Foundations’ many committees, educating people, or supporting others emotionally. The list is endless, and you will feel better knowing you are making a contribution that makes a difference.
I am writing this shortly before Thanksgiving, and I will appreciate it more than usual. In recent years I, like many of you, have experienced many losses (people, pets, previously taken for granted good health).
But in many ways my life is now fuller. I have met amazing people and physicians whom I never would have met. As 2012 comes to an end, and the new year starts, move forward in your own way and make a difference. Your life will be fuller for it. That is a promise.
Just plant a seed.
When I received a recent email about the fall IPPF newsletter, it coincided with my friends from “across the pond” visiting me in Pittsburgh, Pennsylvania. Because one of them is a renowned architect, we visited Frank Lloyd Wright’s Fallingwater masterpiece about one and a half hours from Pittsburgh. Although my friend had studied and admired the incredible house, he had never personally seen it before this trip.
Fallingwater was built in the 1930s as a country retreat for a very wealthy Pittsburgh family. The structure is cantilevered in a way that was not supposed to be structurally possible and with a waterfall running through the house itself that could only seen or heard from the house’s many balconies. At the time it was being built, no one thought the house could be structurally sound. It was unlike anything being designed or built at the time. Its very uniqueness reminded me of people with pemphigus and pemphigoid and how unbelievable these disease processes are to most people.
The Fallingwater structure has not only withstood time and is still standing (with droves of visitors), but it has actually been nominated as one of the world’s great wonders. I think that those of us with rare diseases are, also, great wonders. If we had been ill with some of the P/P diseases in the 1930s, ’40’s, ’50s and ’60s we would likely not even be alive — and yet here we are — alive — and, in many cases, thriving. We are living, walking, talking marvels who have beaten what were once considered unbeatable odds. This was unimaginable only decades ago, and more and more commonplace with every decade that passes. I choose to think of us as unique, beautiful, and amazingly strong people versus diseased people. Sometimes people can see our suffering, but much of it is not apparent to the human eye.
I can only imagine the magnificence of Fallingwater in the fall, when all those beautiful, untouched trees’ leaves are so glorious as they change color and fall off the trees, in a representation of new beginnings.
As patients with special rare orphan diseases, we can consider the stages of our conditions as seasons, flowing into one another, forcing us to adapt. At the first symptoms and through diagnosis, many people face denial. Denial is, and always will be, the most-used defense mechanism humans have. It is extremely effective. Anger may follow, along with potentially depression and anxiety and finally acceptance.
As a psychologist with a special individualized approach for patients with chronic physical illnesses, I have been privileged to be on the journey with many people. The ages, genders, and educational and socioeconomic situations of the patients have not been good indicators of how well they will do in therapy and in coping with their “new normal.” Everyone’s emotional journey will be not be exactly the same, just as their physical journey will not be the same. There will be similarities along the way, and those whose diseases are in remission or more stable can definitely play very important roles in helping themselves and others who are struggling more.
My own journey has been as unique as anyone’s. Some days are more challenging than others. I have been fortunate to have supportive colleagues, most of whom still have no idea how my illnesses work or how they get triggered. If I need extra help I know whom to contact and when to contact them. If you find yourself having difficulties with denial, anger, depression, or other emotional issues, please do yourself a favor and find a professional to work with you and your own particular issues and support system.
As well, the IPPF and its Peer Health Coaches and immensely educational website and Annual Patient Meetings can be great resources as we navigate the seasons.
I know that when autumn arrives in Pennsylvania, I will be heading back to Fallingwater to see the wondrous site and its surroundings in that season. It will be a beautiful sight from many different angles, and I will have special memories to carry with me forever. I will continue to live my life and to make new memories, because that is my choice on my personal journey.

[byline] Terry Wolinsky McDonald, PhD, is a PV patient, clinical psychologist, and former IPPF Board member living in Pittsburgh, Pennsylvania. She is a regular contributor to the Quarterly newsletter in her “Psychologically Speaking” column.

Spring is a time of renewal and growth and therefore change. Yet there is never a better time than the present, despite the season, to pursue change.
For many people it can be a mindset. It may be easier to allow yourself to continue in your familiar pattern (maybe a rut) even if that is not in your best interest, than to actually make changes. For most people, change — although inevitable — is difficult. Even if your status quo is not great, change can feel scary and overwhelming.
How many people decline to go out stating they will do those things when the weather breaks, or some such comment? I wish I had a dollar for every patient I have heard say that. I would be very wealthy. In my professional experience, the answer is that not very many actually do follow through with a commitment to change a behavior or a life situation unless nudged along with small steps. For every one of my patients who has cross country skied to an office appointment (in Pittsburgh!), there are probably six who have canceled. What motivates some people to keep moving forward and not let external factors hold them back?
The human brain is very complicated, but also predictable in many ways. When asked to make a prediction in court, psychologists cite the fact that they do not have a crystal ball. When asked for the best professional guess, the answer is generally that the best predictor of future behavior is past behavior. One does not have to have specialty training in neuropsychology to see patterns in people. This does not, however, mean that most people are rigid and cannot change.
A lot of people do not want (or perhaps have severe physical limitations that do not allow them) to get dirty and plant the seeds for a new garden. This could be because of physical limitations on exercise or the necessity of avoiding specific foods. Yet when presented with a beautiful blooming garden, most people do appreciate the colors, scents, and sheer beauty. Even one living and thriving plant can enhance personal moods and energy levels.
I vividly remember my second year of pemphigus, when I was still experiencing devastating symptoms. My own choices were to live and work to the fullest. I did not cancel my planned visit to see one of my closest friends in Europe. I did, however, request that rather than visiting my favorite Paris museum to view my favorite Monet paintings.
We actually drive to Giverny in France and visit Monet’s actual gardens. For some reason I found that being in an exquisitely beautiful location actually energized me and helped me to heal. I also found paintings and photos of flowers and trees healing, and I surrounded myself with them both at work and at home. Needless to say this was in addition to, not in lieu of, traditional medical treatments.
Taking care of your psychological health can sometimes be done with supportive family and friends at this critical juncture; however, this is an ideal time to at least get a psychological or other mental health evaluation. The feelings, thoughts, and sense of loss will likely not be at a healthy place at this time. Talking with a mental health professional, preferably one who understands the psychological aspects of chronic illness or pain, can often nip emotional problems or cognitive distortions in the bud.
Having one or several serious chronic illnesses does not mark the end of living a full life, but rather a new beginning. Planting seeds can be a positive beginning. Of course, seeds need to be cared for and nurtured, which is what people — especially those with pain and/or chronic illnesses — find necessary for their own healing process.
What if those closest to you are unable to handle illness, doctors or hospitals? They clearly will not be the people who attend necessary visits, labs, or treatments with you. You can look for support with others or through a separate, perhaps more formalized support group. However, those people previously closest to you may be able to help in other ways. They can grocery shop, make a bed, cook, clean up, fold laundry, or take out the garbage. The list of tasks to lighten a patient’s load is endless.
Nurturing oneself may mean cutting back on work hours, learning to schedule exercise or massage, eating healthier foods, or just dancing to music like there is no tomorrow! It also includes budgeting wisely — not just your money, but your valuable time and energy. How many times have you agreed to do something that you knew was not in your best interest? Perhaps you agreed so as to not let someone else down. If that person truly cares about you, he or she will understand. If offended, that person is probably best left in the dust. If you have great difficulty saying no ( otherwise known as “the disease to please”), try saying, “I don’t want to let you down and would love to be able to say ‘yes’ to your request, but ________.” It can come across more easily that way and also makes the statement more positive. Eventually, saying no when it’s appropriate becomes second nature.
Because I have several autoimmune illnesses, I have had to retrain people in many ways. For example, my husband no longer asks me if I want to take a walk or go to the museum, etc., but rather if I feel up to it. Just changing the way something is said or done can go a long way, and sometimes just one word can make an infinite difference.
I suggest if you’re seeking change or even a slight improvement on your emotional situation, that you think of yourself as newly alive — perhaps a flower bud. That bud needs to be watered, to get enough sunlight, to be in a temperature controlled environment, and to be nurtured in order to blossom. You have more control over this than you may have previously realized. You may have heard the saying about how when one door closes, another one opens. I absolutely believe this to be true. However, sometimes the hallways between the doors can be very dark. You may need a flashlight. Personally, I prefer scented candles! Figure out what is most important to you, and slowly but surely take those first small steps in this new and different way of being in the world. Growth does not only happen in spurts. ippf
We all know how much we want to be independent and strong for ourselves. We also know we sometimes need help and how hard it is to ask for it. We don’t want others to think we are weak or lazy. In this column, I have previously addressed issues such as taking care of caregivers and caregiver burnout. What happens when we—the patients—become the caregivers?
Given the nature of autoimmune diseases like pemphigus and pemphigoid, many patients go on to get diagnosed with additional illnesses, both chronic and acute. In addition, we are still susceptible to all the illnesses (cancers, heart disease, etc.) that others can get. Sometimes the very people we depend on to make our lives less challenging become ill themselves. It happens. When the tables get turned in this way, we either take care of each other or the roles may totally reverse, with the patient becoming the caregiver.
Psychologically, doing positive things for others is very important to our own sense of self. We naturally need to feel needed: it makes us feel good to be giving back. But for those of us who have been on the receiving end of someone else’s care, it is critical to understand our individual limitations and not to overtax ourselves. Stress is a significant risk factor for flares, and its management is an important component in maintaining a healthy mind-body connection. If we are unable to take care of ourselves first and foremost, we can not be there to take care of others as well as we may desire.
This can be the really tricky part: how do we know how much more we can handle? We may look well, but not be fully capable of supporting another ill person. I can guarantee that most of us tend to take on too much. If you begin to feel drained, you have already crossed the line between healthy and unhealthy.
Personally, I have a number of diagnosed disorders, but unless someone knows me very well (or has access to my medical records) they are clueless. I don’t look sick. That is fine; I do not want to look sick. However, I make sure to be in touch with my body and my own limitations on a daily basis. This has been put to the test on numerous occasions over the years, but never as much as recently. I am an expert on this as far as my patients are concerned, so it would seem that I should know better. I have always been content to be a strong person, serving as someone who has the knowledge to help others. However, recently I have found greater need to practice mindfulness exercises and to give myself permission to take “pauses.”
What do I mean by “pauses?” Some highly trained people are able to do self-hypnosis and induce trances. More commonly, people practice mindfulness and meditation. Mindfulness has become trendy, and research is starting to support the positive aspects and outcomes of it. To start, you need to sit quietly and intentionally focus on retraining the mind be totally in the present. In practice, this means being focused on your breathing and on your physical state throughout the body. When you feel yourself getting lost in your thoughts, refocus on the breath, counting how long the breath lasts and the feeling of your body as you breathe. Closing your eyes can help. Consider these pauses, lasting from between 5 and 15 minutes when you first start a daily practice, as a “reboot” of your mind and body.
As you practice, trust that you will come to know your strengths and your limitations. If you find yourself needing to care for another person, you will find it useful to have the skills to listen to your own body and to be the best you can be for yourself and those who need you. ippf
One of the first things to remember about illnesses and the side effects of medications is the effects of illness are not just physical. There is an emotional component as well.

For example, the prednisone roller coaster is both physical and emotional. The ups and downs often have patterns and triggers, and these are not always predictable. The mere fact of having an illness can lead to depression, with or without side effects from medications.

Psychologists have been called “an angry bunch of shrinks” (Newsweek, December 2013) because of their collective response to new and unsettling upcoming changes in current diagnostic criteria and standards. The Diagnostic and Statistical Manual (DSM-IV) of the American Psychological Association has been the “bible” of the psychiatric profession for more than a decade, with the new version (DSM-V) going into effect in October 2015. The physicians’ ICD-10 (or International Statistical Classification of Diseases and Related Health Problems) will also be issued at that time.

In this article I will review some current diagnoses and criteria related to depression. With the aforementioned changes more than a year away, now is a good time to go over the diagnostic criteria for depression as outlined by the DSM and ICD standards. Lenore Sawyer Radloff’s Screening Test for Depression (see p. 17) can be used to monitor your own symptoms and patterns.

One mood disorder in the current DSM-IV is simply called “Mood Disorder Due to ____________.” The blank is filled in with a specific general medical condition, such as pemphigus vulgaris. The diagnosis may develop into a clinical depression over time, which has a different etiology. The diagnostic criteria for these generic mood disorders include:

A prominent and persistent disturbance in mood predominates in the clinical picture and is characterized by either (or both) of the following: Depressed mood or markedly diminished interest or pleasure in all, or almost all, activities. Elevated, expansive, or irritable mood.

There is evidence from the history, physical examination, or laboratory findings that the disturbance is the direct physiological consequence of a general medical condition.

The disturbance is not better accounted for by another mental disorder so as to distinguish this general mood disorder from “Adjustment Disorder With Depressed Mood” in response to the stress of having a general medical condition, another clinical diagnosis.

The disturbance does not occur exclusively during the course of a delirium.

The symptoms cause clinically significant distress or impairment in social, occupational, or important areas of functioning.

Common symptoms of depression look different in each circumstance and with each individual. A diagnosis may be given if there is a prominent and persistent disturbance in mood that predominates in the clinical picture, and it is further characterized by five or more of the following:

Persistent feelings of sadness

Difficulty sleeping or excessive sleeping78_psychspeaking_opt

Poor or increased appetite

Weight loss or weight gain

Anxiety, restlessness and agitation

Inertia: feeling “slowed down” or low in energy

Tearfulness or an inability to cry

Difficulty concentrating, remembering, or making decisions

Loss of interest in sex and other normal activities

Social withdrawal

Difficulty functioning at work, at home and/or in social situations


Suicidal thoughts or passive thoughts of death.

Ill people will often try to hide their symptoms until they lose the energy necessary to keep up the act. After all, the last thing most people want is more prescription medications or treatments. This is more so when their bodies have already “betrayed” them and medications are necessary just to not get sicker. It is important to understand what is happening emotionally and to get a proper diagnosis. With a diagnosis can come appropriate treatment.

The simple 20-question screening test for depression can be self-administered. I often recommend that anyone who is concerned or has symptoms they do not understand make copies and re-test themselves roughly every two weeks. This particular screen looks at the feelings and thoughts for the previous seven days, so you could use it weekly if you wanted to.

I often use this tool as a handout at presentations. Patients (and caregivers) usually come up to me and express surprise at how many statements they have endorsed. Many have no idea these particular feelings and thoughts were actually signs of depression. As I noted above, with diagnosis there is treatment.

My philosophy is to refer patients to a knowledgeable psychiatrist for evaluation for possible psychotropic medication. The psychotherapy component may be a fairly short-term cognitive-behavioral model, or a more lengthy psychodynamic approach. The bottom line is that everyone is unique, and no one needs to feel worse than absolutely necessary. For some people this means medication, especially in the beginning, or more frequent therapy appointments. The doctor will monitor and make changes as necessary. Having said that, the sooner the emotional diagnosis and the sooner treatment begins, the better and faster the positive effects will be in stopping any potential downward spirals.

It is often easier to speak with a professional than with someone in your personal network. The key is to identify any problem areas and to address them, not just put on a band-aid when emotional surgery is necessary.

I have actively sought out meeting fellow P/P patients in lo- cations I like to travel. By doing so, I have made some great friends around the world. This past summer I wanted to recon- nect with friends in other countries. I had already planned to vis- it my closest friend in the world, Berna, who lives in Belgium. For me, these face-to-face meetings are very important. In fact, the first person I actually met face-to-face was Hermien from The Netherlands, and we found each other on the IPPF’s original dis- cussion group. Our first meeting was in April 2002 and I had just received my diagnosis the previous November. Hermien Konings took a train and met me in Leuven, Belgium. She brought my friend flow- ers and me some cereal, copies of all of the information she had on pemphigus, and a Vivaldi CD for relaxation. This was the first time either of us had met anyone with our disease, and neither of us can now remember how much we hugged one another that first day. As with other people I have met on this journey, you just seem to know that some relationships last forever. We have met on four different occasions over the last 10 years, including one PEM Friends “away weekend” at the beautiful home of Carolyn Blain in the UK. Hermien was instrumental in starting a support group in the Netherlands, and put together a major conference with IPPF Medical Advisory Board member Dr. Marcel Jonkman. In June 2012, I took a train to Amsterdam from Belgium. It felt so good to spend the day together talking, walking, and dining. We visited the new Hermitage Museum (wonderful Impression- ist exhibit) and other sights. We had a terrific day and our face- face together time continues to be incomparable. I returned to Belgium the next day with some photos — and lots of precious memories. Another wonderful person I had met was PV patient Oceane and her mom, Isabelle, at a PEM Friends luncheon in London in 2004. Oceane was then 7 years old, but beautiful and deter- mined. Since then, I had seen photos and stories about her diffi- culties and breakthroughs, but not had any contact.

During that time, Isabelle became active in the French support group. I was determined to reconnect with these special people.

The week after visiting Hermien, Berna and I traveled to Paris and to meet with Isabelle and Oceane. I quickly realized that after 8 years, young children really grow up. When I first met Oceane, she had been diagnosed with PV for two years and her doctors were worried about her being on systemic drugs at such a young age. Oceane had written about the difficulties she en- dured, even having to soak in
a tub at night just to remove her clothes. The good news is Oceane just turned 16 and is doing great! Isabelle shared some literature and material from their support group as we walked around Paris (Oceane and I definitely share a sweet tooth). It was a fun adven- ture where time passed too soon for our liking. Oceane gave my friend and me special cups used for relaxation in a Paris bistro- type of atmosphere. Saying good-bye was difficult
and emotional, but I am grate- ful to have met these wonderful people. The “I” in IPPF stands for International making these face- face meetings truly special times for those of us who are able to connect — and reconnect. These friendships carry the same un- common bond that brought us together. Crossing the “pond” was — and will continue to be — a very important part of my life. How lucky am I? My advice to you is if you have an opportunity, grab it!

Just as life is a journey, so is living with chronic illnesses like pemphigus or pemphigoid. In the last newsletter, I emphasized transitions along my personal journey. Chronic illness is an adventure no one signs up for, but once the diseases are triggered, life is never again exactly the same.

For those newly diagnosed, or their family, friends or caregivers, it can all seem unreal at first. There is a vague beginning to the new normal, as it takes time to get educated and to process the diagnosis and information. Even after there is an acceptance of the situation, it is overwhelming.

Everyday life becomes uncharted territory. One thing is for sure: now challenges seem to pop up a lot more. How the challenges are met will make the difference between function and dysfunction.

The pemphigus and pemphigoid (P/P) community is not a static one. Everyone goes through different stages in different ways, but with more similarities than differences. This is why the community continues to grow. People who have had very similar situations – and have made it through to the other side – are there to help you. Eventually, once your own life and illness have stabilized, you will have the opportunity to be there for others.

Some people will get more ill than others, and some people will respond more quickly to treatment. For everyone this is an adjustment — and again the degree of difficulty differs between people. Having an IPPF community, with a discussion group, a social media presence, award-winning newsletter and website, peer health coaches and volunteers (and more!), has helped many people along this journey in so many positive ways. Maybe YOU have been helped by one or more of our resources?

The IPPF works hard to ensure that no one has to go through this alone; this is not just helpful, but a bond, and one that strengthens everyone involved. It is a lifelong bond – one that keeps gaining strength. No one has to navigate this road alone any more.

This is the time of the year to give; but in our community, there is a need 365 days a year – not just one “giving” season. If you are not currently participating in some way – ANY way – there are many who would love to see you get involved.

ou do not have to dive into the deep end.

Start small, get your feet wet and move forward at a pace that is comfortable for you. Ask for help, guidance and advice along the way.

Consider sharing part of your journey with others in the P/P community. Maybe you…

  • know of an informative article we can use in the Quarterly?
  • would like to contribute a personal story that inspires others?
  • are available for an interview for an article?
  • can reach out to a newly diagnosed patient to lend an ear and encouragement?
  • have advice for the newly diagnosed we can share on a broader scale?

Because of the support in our growing community, health coaches, webinars and annual patient meetings, you will meet people who can help you learn new positive coping strategies. These new tools will allow you to continue your own movement, becoming more and more resilient along the way. You will internalize the newer and more positive coping mechanisms, and hopefully leave behind older, strategies that are no longer working.

The point is that you WILL find yourself feeling and presenting yourself differently in this world. When you calmly and rationally respond to someone in a new way (rather than reacting), your response may even change how the other person responds to you – and others – in the future. You will gain momentum and move forward in your personal journey.

As I write this column, it is a typical colorful Pittsburgh Fall. Some trees are still green, some have lost their leaves and are bare, and others are continuing to change colors and are absolutely glorious.

Practicing mindfulness and being “in the moment” allows one to just watch and enjoy nature with a combination of awe and appreciation. I’m not a personal fan of cold weather and bare trees, I know we will have winter wonderlands soon, with freshly fallen glistening snow – on the ground and on the trees. Everyone’s personal journey moves forward and changes just as the seasons change and cycle.

During your life journeys there are choices to make and different roads which can be taken. You can take the road most often taken or take the one not usually taken — neither is correct or incorrect. Just remember that there are always choices. Also try to remember that road that seems most “safe” may not be and may not help move you forward. Everyone makes mistakes, because humans are not perfect. Mistakes help people learn. Moving out of your comfort zone is not easy; it is a choice, and if you choose to stay on the same seemingly “safe” road, that is also a choice. Please let this last point sink in. DOING NOTHING IS A CHOICE.

Yes, life is a journey, but as you travel through, remember this quote: “What lies behind us and what lies before us are tiny matters compared to what lies within us” (Ralph Waldo Emerson). If you are reading this article and have gotten this far, look within yourself for that extra strength that may seem to be eluding you; it doesn’t always come from others. Maybe you just need to look a bit harder within. And, do not be afraid to ask for help.

Happy holidays. Try to start a new tradition this year. Tis the season to give – not just money, but of yourself. It will make your own personal journey more interesting and also sweeter, and by reaching out to others you will be making a far more important and satisfying contribution.

GlassesLiving in the northeast (actually mid-Atlantic), it is still very much summer – with humid heat and lush greenery and flowers surrounding me outside – as I write this. Nature is very much alive and in all its glory. In another month or so, I know that the leaves will be changing colors and dying while retaining their extraordinary seasonal beauty. It is really quite remarkable how beautiful nature is when dying. It doesn’t feel like a death, but more like a segue into a new and different way of being in the geographical areas where we experience the seasons and annual changes. Changes and transitions are always with us; some are just more noticeable and harder hitting. It is a cycle that continues – even with global warming and human intervention. As always, the only constant IS change – and so transitions are part of our lives whether we fight them every step of the way or accept and welcome them, learning from our experiences. Changes of any kind can take us out of our comfort zones, but are necessary for our individual journeys. People are complaining about the very hot and humid summer we are experiencing, but it brings back memories of the old “dog days of summer” which I fondly remember growing up with in the 50’s & early 60’s – without the comfort of air conditioning or even fans. I have no idea how we did it, but we did – and had fun even while sweltering. Running through a “sprinkler” attached to a hose on someone’s grass was like a piece of heaven in those days, but nights were more challenging! This made the season change even more eagerly anticipated; it always felt like summer lingered a bit too long. Of course, with age, the days, weeks, months and seasons seem to go more and more quickly, keeping us on our toes. No two years (or days) are exactly the same, which keep us guessing just as these rare chronic illnesses do. There are less challenging days and more challenging days with tears of both joy and sadness/loss along the way. The days merge into weeks and then months. Seasons change and other transitions – some smooth and expected. A lot of people become conditioned to dealing with crises, and encountering and overcoming problems and difficulties usually leads to more resilience – a very positive quality to possess. Unfortunately, a growing number of people seem very at ease with crises, seeming to live from crisis to crisis while not dealing with everyday life. This is not a natural way to go through life and leads to very real daily difficulties and unhealthy stress levels. The studies on stress continue to highlight the negative aspects of the mind-body connection. No, not every ache, pain or serious illness is caused by stress; but stress-relief strategies that work can make everyday life “easier” (or less difficult) and make crises smoother to navigate. This can be thought of as a navigation system of sorts in our life’s journeys. Unfortunately the navigation system must be learned through training, experiences and successes and failures. Often we do learn the most from our failures. We all go through stages and often with some back-peddling from time to time. These are NOT negative times. Think about an EKG; a flat line is not a good thing. The small ups and downs are totally “normal”, and it is only when there are extreme changes that they are harmful. That is when people need extra help and more and more often seek it out – or go back to a therapist or psychologist (or family member, friend, colleague) for a “tune up”. Sometimes the positive coping tools are misplaced, lost, forgotten, rusty or no longer enough. Frequently, one of the most common initial diagnoses for patients is “Adjustment Disorder”, which usually passes once new tools and strategies have been learned, especially with a mindfulness based cognitive behavioral intervention. Psychotropic medication may or may not be prescribed, and some are short-term, while others may be more long-term in more complicated cases, or when the person has deeper underlying emotional or psychological problems (e.g., bipolar disorder, recurrent depression, a personality or panic or other anxiety disorder). Sometimes previously repressed underlying issues emerge and take longer to resolve. Financial, insurance, work, primary support (or lack thereof), physical illness and other social and environmental concerns can work toward or against the eventual resolution of problems. Being aware of these and of the larger situation always helps. For me, I have spent 10 years on boards devoted to pemphigus and related diseases and have watched and participated in many changes over this decade. It has been an amazing and exciting time. I went from being a healthy and high-energy person with one long-term autoimmune condition that was under control (for decades) to developing new and life-threatening conditions. My previous chronic condition, along with other acute health issues at various times, probably gave me an advantage regarding resilience. I went through the same basic stages as anyone else, but also felt very strongly almost from day one that it was all for a reason – for a purpose. I soon learned that the psychological and emotional components of these orphan diseases were not being addressed. It is, of course, always critical to get the disease itself under control, but I would argue that being as mentally healthy as possible and with a strong support group is nearly equally important. I have not been among the fortunate who have been in remission for any considerable length of time. My one partial remission included symptomatology that was atypical. That diagnosis was made and addressed; monitoring myself daily is routine. After a particularly nasty and stubborn flare this year, I felt the need to make some serious new life decisions. I did use the Cognitive model of decision making, examining all the facts and then carefully weighing options, while taking a few steps back for perspective. I have made some decisive strategic moves, including stepping down from the IPPF Board of Directors. However, I will always remain very involved in the IPPF, especially where patient support is involved. his will allow me to have more time to make necessary decisions regarding my own health, volunteer and professional work and family. It is just one more life transition along the road. The coming years will bring new and different challenges and changes, but these transitions are necessary and very positive. Our IPPF Board of Directors has several new and very capable and passionate people who will continue to lead this Foundation forward in new and important ways. It is a very exciting time for the IPPF and the welfare of all patients, families and friends. My participation with the IPPF remains an integral part of my life, but it is a time to re-prioritize, take the time to smell the roses in the moment, enjoy the beauty of the fall/autumn leaves and then make snowmen or just watch the winter wonderland, before spring and the start of the next season. I look forward to this transition and to the new and interesting places and opportunities which will be part of the next phase of my own personal journey. Not only do I not fear transitions, but I look forward to them and what they will add to my personal human experience. Also, your Annual Meeting Committee is working hard to make the 17th Annual Patient Conference in Chicago, April 25-27, 2014, a fulfilling experience for all who attend. We are looking at trying more changes, based in large part on feedback from patients and their families and friends who’ve attended the conferences. Yes, we are listening and making necessary changes. Please consider what special talents or interests you may have or have access to as we ramp up our volunteer system and add ad hoc members to committees. Those experiences will not only add to your personal journeys, but also the future of the IPPF. And who knows? Maybe it will be a special and transitional time for you!
Somewhere along the line, the general public came to believe that doctors are all-knowing they are always right, never wrong. Many of us know doctors who also seem to believe this. Clearly — and thankfully — not all doctors feel this way.
However, we are putting our lives in their hands, and what could be more important than that?  I would venture to say that most people, especially those with rare, chronic illnesses have doctors that they absolutely love and have total confidence in their expertise. Meanwhile, others are not so lucky and believe they have limited physician choices with certain illnesses.

As one of those people whose initial diagnosis took nearly a year to get right, and who got sent to all kinds of “specialists,” I found many of the professionals to be nice people. However, many were clueless even after a biopsy was done (probably because it was sent to a lab for the wrong test). I think some of them felt badly about it. Still, they just kept sending me to other specialists, mostly oral, but no one seemed at all clued in.

As a professional myself, I spent years working with, or parallel to, many other professional doctors who also were stymied. I was never told that my symptoms were psychosomatic or psychological by those who knew me. Because my mouth and throat were practically raw, I could not eat or drink many things. I lost weight (maybe 13 pounds after a year which for me is a lot) and at least two physicians thought I had anorexia – even though it was crystal clear how difficult it was for me to eat and to swallow. I was particularly puzzled by dentists, oral surgeons, endodontists, periodontists and even oral pathologists who could not recognize what was happening in my mouth. Skin and blood were literally falling out and my mouth was horrible to look at — a total disaster!

I was not just discouraged at appointments, but frustrated over the time it had taken me away from my livelihood. These specialists who did not know me seemed to think that I had an eating disorder. I quickly dispelled that notion, told them they would not be paid for wasting my time, and left quickly making sure to call my insurance company to stop any payments for services not provided. It was about the principle for me. I believe that a person cannot know everything — I am the first to admit that.

I am thin by nature – so thin that the first time I was in the “normal” range was when I was giving birth. Still, with all the effort I put into keeping weight on, I kept losing weight. Is there anyone out there with these diseases who hasn’t gone through this? Even for those who are overweight to begin with, the initial weight loss with the oral symptoms has to be traumatic.

My primary care provider (PCP), an Internist, was someone I had known since we had been residents together at the hospital where we worked. We had worked well together and shared a mutual respect with a good relationship prior to all my “new” and “mysterious” symptoms. He had absolutely no idea what was going on, but never seemed to grasp the seriousness of my situation, or that it was a medical condition versus a dental issue.

I remembered writing something in my journal and telling him: “I don’t know what is wrong with me but somehow my immune system has been compromised.” About six months into my symptoms I told him I was going to die if he didn’t figure it out. He was not convinced. He said I was being dramatic which was not like me. I told him I had already written my obituary with only the date and cause of death left blank. I think that threw him over the edge because I was 100% sure of that eventual outcome.

As both a patient AND a provider, I firmly believe that all of us know our own bodies better than anyone else possibly can. I also believe we need to learn to “listen” more carefully to what our bodies may be telling us – regardless if we attended medical school or not.
It took more than nine months for me to get the right diagnosis. It was from a dermatologist – although still completely in my mouth at the time. She laughed at me when I politely said I had come for another reason and that the problem seemed only oral and esophageal. She told me her father was a retired dentist, but that my symptoms were definitely dermatological. She was sure it was one of three specific diagnoses that were not previously on my list. She took yet another biopsy and sent it for the correct lab work. At my urging, the lab also procured my previous biopsy (done six months earlier), which was, as it turned out, a textbook case of pemphigus! IF those other “specialists” had done the proper tests on the original biopsies, my diagnosis would have come much more quickly, and maybe my gums would be more intact and I would not be missing some teeth!

I did return to one particular oral surgeon to retrieve my records and saw him literally run (yes, run!) into his office and lock his door until I left the office WITH my records. I made sure his office knew I was returning for the sole purpose of procuring those records. I believe in doing my own due diligence and collecting the facts (cognitive model) before considering options.

I often think back to 2002 and my primary care physician who did not believe my problems were too serious or life threatening. I remember going to the medical library at the university medical center and researching everything I could get my hands on. I remember speaking to the dermatologist and when my primary care physician eventually believed the diagnosis. I know my PCP knew how disappointed I was.  Granted, it took another seven years to diagnose my case of Sjögren’s syndrome — which finally explained most of the non-pemphigus symptoms I was experiencing. The Sjögren’s was diagnosed by a rheumatologist who specialized in lupus. I told him I was either totally psychosomatic or that there was definitely something else going on. Fortunately he took appropriate action. That was a true blessing. I believe there are many physicians who really do listen to their patients and see “whole people” and not just symptoms or illnesses. These are the doctors I seek out – and one I try to be in my own psychology practice.
I left my original PCP shortly after the PV diagnosis. After a few other non-successful attempts to find the right care provider, I found one after changing insurance companies. I even found a gynecologist who actually knew the disease in the event it affected me below the belt. I’m happy with my current treatment team because we work well together as patient/physician. Some personalities just don’t seem to work together. I have remained under the care of my rheumatologist for a number of years now and he has no problem making decisions with input from both me and an expert dermatologist.
We as patients are very fortunate that there are experts out there willing to give time and expertise. I never take this for granted, especially since I cannot take prednisone. If not for alternative systemic treatment that only a few people believed in when I was diagnosed, I believe I would not be here today. If not for the generous time of these specialists and experts talking long-distance with my local doctor (at no extra charge to me) and having a local doctor who was willing to ask for help, my life would have ended painfully more than 10 years ago. It has not been an easy road, but I am determined and tenacious – which have served me well over the years. I have been very pleased with my PCP whom I have been seeing for a number of years now. She definitely “listens” and respects her patients.

Amazingly, about a month ago, totally out of the blue, I received a very nice letter from my original PCP whom I had not seen in almost 11 years. I knew he still practiced in the city, but our paths haven’t crossed, except the sharing of a few patients who needed coordination of care. In his letter he made some small talk and also seemed to know how I was doing and about my other diagnosis. Out of sight but not out of mind! He let me know he believed I was a strong person and was sure I had put together a team of competent doctors. Then, surprisingly, he basically let me know he felt he had “failed” me, but that he believed that his failure with me had helped him to improve his care with certain other patients. WOW! I was humbled and felt so empowered.

This letter was very refreshing and very reassuring to me. I have taken several opportunities to present continuing education on pemphigus to the local dental school. This letter has given me HOPE and REASSURANCE that our messages do get across. Yes, we all have the ability to strengthen awareness and to educate: It does not have to a massive audience, but every professional reached makes a difference.

As the Foundation moves forward with our Awareness Campaign, it is my most fervent hope that no matter how frustrated and angry you may get that each if you continue to teach and educate medical professionals about early diagnosis and treatments.

Just don’t give up!
That mindset leads to something called “learned helplessness” – which leads to a core belief system that no matter what you do, nothing will make any difference. This leads to major depression.
Keep going. Move forward. You can all make a difference. All of us can!

How awesome is that?