The Emotional Side of Chronic Illness a Therapist With Primary Immunodeficiency, IBS, alopecia, chronic pain, and PCOS Perspective: Eva from WellaCopia Interviews Jodi Taub
Our New Chronic Health Podcast Series!!!!
Health Practitioners with chronic illnesses
Dealing with Polar Vortex with chronic illness
Specializes in chronic illness mental health
"But you don't look sick" aspect of invisible illness
Chest ports catheter
Invisible Illness Discrimination
Mental health and chronic illness
The use of online support groups
How to cope with chronic illness for children
Dating and chronic illness
Out of the Invisible Illness Closet
Basic intro questions
· What is your profession? I am a Licensed Clinical Social Worker with a private practice in NYC.
· What is your illness(es)? Are you ready for the list? Here goes: My Main Illness which is the reason for all of my subsequent health issues is Primary Immunodeficiency. This means that my immune system does not function appropriately/and or is missing functioning parts of my immune system. This results in severe, chronic, and hard to treat infections, mainly sinus, pulmonary, gastrointestinal, and skin, but we can always throw in a bladder infection or some other random infection each year. I receive bi-monthly infusions of Immunoglobulin Therapy, and have a chest port catheter because I often require daily, long term IV antibiotics for weeks or months at a time because I have infected bone in all of my sinuses. I have asthma and bronchiectasis, eczema, allergies, what was initially diagnosed as IBS, than Ulcerative Colitis, and now gastrointestinal issues related to PI, GERD, PCOS, chronic pain due to disk herniation and degenerative disk disease due to a car accident in 2003. I also have acquired some new diagnoses as of late: Hashimoto’s, Raynaud’s Disease, Anemia, and Androgenic Alopecia.
· Where do you work? NYC and on my couch when I am not feeling well.
· Who do you work with? I am very lucky to be able to combine all of my extensive work experiences into my private practice. Prior to becoming ill, I worked as a therapist in foster care and adoption and in residential centers. Later on, I completed a Post Master’s in School Social Work and was a school social worker(which also focuses on children with disabilities in the school system). I started my private practice 11.5 years ago. My private practice represents all of my 22 years of direct care experience post college. I work with children, adolescents, and adults. I conduct individual, group, couples and family therapy. In recent years, I have specialized in patients who are coping with the emotional difficulties of living with Chronic Illnesses, which is why I am here. Because of my work within the Chronic Illness community, I am also an expert speaker, and have conducted over 30 lectures across the country for patients and families who are coping with chronic illness, more specifically with PI.
· What makes your approach to care unique (think Wellacopia)-I am really enjoying this time in my career. In my early years, I was in school forever, and worked really hard to try to hone my clinical skills. I am now at a point that my craft is really natural for me after 20 years. I think because I am real. I am approachable and informal. There are a lot of myths about who a therapist should and and should not be, and also about what type of personality attributes you should have. We are an eclectic profession. Community members often ask me for therapy references, and I will often hear, “Do you know of a good therapist?’ I always ask a series of questions to find out who would be the right fit. I always say, “Who would be good therapist for you?” Therapeutic style, approach, and personality are really important. We all have different personality types. Speaking to someone about your inner emotional world-the most important thing is to feel comfortable with that person. This also translates to finding your own medical care team. Some people can be a part of a larger health care system, and some individuals will require more specialized care.
· How did your illness shape your career? It changed the course of my career. I have suffered from all of my chronic illness which came from PI my entire life. I just thought that I had a ton of different health care conditions which were not related. When I was 30, the chronic persistent, serious infections really hit, and it changed the course of my life. Completing grad school and post graduate schools, I worked full time while hustling through. In fact, when I became really ill, I had been working at a school as a school social worker. My body was really shutting down, and I was constantly in the hospital, and having surgeries. The truth was that I could no longer work a traditional 9-5 pm schedule(And at that time in my life I was working 9-9 pm to pay my bills). It was at this time that I had two opposing supervisory job reactions. My boss at the therapeutic day school was trying to fire me to due my illness, and my supervisor at Catholic Charities wanted to do whatever she could to accomodate my circumstances. My supervisor offered for me to take on a small case load and the flexibility to set my own hours. I could work nights and weekends, and could complete paperwork at home or on a laptop during appointments. I quit the school job, and bulit my private practice while managing a caseload at Catholic Charities. Four months after I quit my school social work job, I was diagnosed with Primary Immunodeficiency, and shortly after began IVIG infusions.
I learned a ton from this experience. I could have become consumed by the negative experience with my school boss who was descriminating against me. I could have really been disappointed for just completing a post master’s in school social work and learning that given that I had immmune system which could not fight off germ’s, I could never work in a school again.
On the other hand, I had the opportunity to begin an entrepreneurial adventure as a therapist consultant which lead me to start the private practice. There are always two ways of looking at circumstances, particularly when your journey takes a different path.
· Are you open about your illnesses with your patients? If so, were you always? Yes, I am. In fact, it is an agenda item I highlight during intake. I let all new patients know that I have a compromised immune system. I explain that if they come in with symptos of a cold or cough, I can become really ill. As an alternative, we can teleconference or reschedule for another date. This is another example of how personal modifications allow me to be gainfully employed.
From a personal perspective, I took me sometime, as it does with most people to come to terms with illness both professionally and personally. From a professional perspective, I wanted to maintain my practice and all of the years of work experience in my practice. In addition, I wanted some space from my illness professionally. Although, I began volunteeing with the Immune Deficiency Foundation from the onset of my illness as a guest lecturer and conducting coping skills groups nationally, I still was not seeing patients privately in my practice. Because having an impaired immmune system, impacts almost every system in my body, I have a ton of specialists. There doctors started sending patients to me who had a variety of different health care conditions, including but not limited to Chrone’s and Colitis, IBS, Lupus, Cancer, Rheumatoid Arthritis, Fybro, EDS, Lyme Disease, Allergies and Asthma, MS, Rare Disease, and PCOD just to name a few. My immunologist had been encouraging me for years to see PI patients in my practice. And now as we have increased PI patient diagnosis, I see PI patients, as well.
Personally-and I talk about this with patients all the time, when to tell individuals was on a case by case basis. I realized early on how often patients with Chronic Illness can be descriminated against. I have had people sneer while wearing masks on planes, or many friends and family members who did not validate or understand my experience. If all I had to do was add some more Kale to my diet, I would have long ago been cured! As many chronic illness patients have experienced, I have had others judge make judgements about my capabilities. Just because I attended work that day does not mean that I will be exhausted and could participate in a recreational activity at night. I talk about this a lot with my patients-My illness now impacts every aspect of my life, from work to how I spend my free time, to dating. Dating can be challenging. You have to establish your own boundaries and determine when it is appropriate to tell someone and WHO is appropriate. If you tell someone before there is an attachment, and there is a connection, it may be too much. There are significant others who I told right away because we had a conection, and other’s whom I told later on, or even never told.
· What are you most passionate about in regarda to your work? Working with patients who have rare illnesses and chronic illnesses because I get it! This is why I chose to specialize in Chronic Illness. For many individuals with Invisible Chronic Illnesses, we experience descrimination. People can say really cruel things, and can make assumptions when they don’t understand how your disease manifests itself. For most people, illness has an onset/recovery model. This means that their is an onset of symptoms, you get diagnosed, and than you recover. This is the model for most short term contagious illnesses such as colds and the flu. People can also recognize some physical disabilities such as cancer, such as someone’s baldness. Most people can’t identify chronic, invisible illlnesses. When people say to me, “You don’t look sick,” in return, I ask, “What does an infection look like?” This puts us in a very difficult predicament. This means that is was likely that it took many years of suffering before you were diagnosed. Specifially, PI is now up to 15.5 years from onset of symptoms to diagnosis. This means that there was a lot of collatoral damage along the way.
· How do you handle flares while at work? Because I have so many health care conditions, there is usually some sort of health issue which I am managing daily. I practice what I preach, and I make modications to accomodate my health care lifestyle. I typically see patients in the morning, and leave a chunk of time open for paperwork, so that I have the flexibility to attend my doctor’s appointments when necessary. You saw an example of that-you came to my office while we reviewed potential topics for the podcast. I asked you if it was ok, but I lubed up and ran my IV antibiotic while you were there.
· How do you handle being a practitioner, patient and your personal life? Balance. I really try to maintain the same balanced work/medical/life balance which I recommend to my patients. If I am not feeling well, I slow down. I say no, a lot. I think its important to set expectations, and if I have too much going on, I will priortize what is necssary.
· Do you tell your patients what you tell yourself/do you practice what you preach?
· Has your condition made you less or more empathetic to those like you?
· How do you feel about holistic medicine? What does it mean to you? I feel that a collaborative approach is important. I work with my patient’s physicians, psychiatric nurse practioners, psychiatrists, and other care specialists to coordinate care.
· Tell us about a special experience with a patients (uplifting)
I have a PI patient who had been recently diagnosed with PI prior to college. She flew cross country, and it was really difficult to adjust to college and what this illness would mean for her. Her tranistion wad difficult. She was able to move from feelings of despair and feeling overwhelmed to a well adjusted college students. That’s why I do this. I know how hard it can be and I want to make this easier.
· If you had one message to send out to every chronic illness patient out there, what would it be? Please don’t loose hope. One of the most difficult parts of living with chronic illnesses is that it can be isolating, both physically and emotionally. It is inherent to managing disease the time spent on your health or feeling ill can take you away from other things in your life. It is really important to have community. There are two types of community: Your personal medical care community and your disease specific peer community. Your community could be friends, family members, significant others, who help in different ways. I have friends whom I can talk to on the phone, and others who will pick me up from appointments and surgical procedures. Different people can be helpful in different ways. I also encourage you to connect with disease specific peers. We now live in a time when there are all sort of facebook groups. It is really important to connect with others who just get it.
We are having varying degrees of abilities, so what works for one person may not work for someone else. You have to find a way to have some joy in your life and on your terms. None of us chose to be sick. We did not have a choice in our genetics. However, we do have a choice in how we live and thrive despite living with our lllnesses.