Ah, the dilemmas of chronic illness. Unlike cancer, heart disease, stroke, or other acute and life-threatening conditions, chronic illnesses like pemphigus or pemphigoid do not mean using very aggressive treatments and then having the disease removed. Nor do the diseases have name recognition. It is like a never ending story but not like a storybook. Previously published articles have addressed “coming to terms with your illness” and “compliance” issues, which are all relative now.

This article was prompted by patients who want to be permanently off potentially harmful medications. Don’t we all? In an ideal world we would be, but who says this is an ideal world?  I am not happy about my situation, but I am grateful to be alive after almost 6 years of PV.

The term ‘chronic’ means just that; it’s not going to just go away. We all dream of remission, of getting off medications, which may or may not happen. At the Unity Conference in NYC (September 2006) I kept hearing Mission Remission! For many of us remission may not happen, but that doesn’t stop us from wishing and working for it and planning/ hoping for this outcome.

When one of my own patients recently had difficulties with her insurance company (a one month lapse in coverage), she tried to explain that she had two serious chronic illnesses for which she needed out patient hospitalizations and infusions. Finally, she just asked them “what part of chronic they didn’t understand.” She did get her coverage reinstated, and she refused to back down, taking back control over her life and her conditions–at least partially.

She insisted they ‘google’ chronic on the internet if they didn’t understand the dictionary definition. This was an empowering experience for her. It may also have saved her life. Many patients have issues with medications – sometimes because of the idea of pills and more pills, ointments, compounds; with side effects and money issues.

Ultimately unless we are taking our medications as prescribed by our doctors, we are being noncompliant. If we are noncompliant with our treatment as prescribed by the doctors caring for us, we are not working in our best interest and are toying with our conditions and futures.

Of course, if it gives us a feeling of being in control the rational reasons for compliance seem to fade. Education is empowering; noncompliance is simply not acceptable. Doctors can, and often do, ‘fire’ patients who are not compliant. If the patient has been noncompliant with treatment, this is not considered “abandoning” the patient. If there isn’t confidence and trust, it is probably in everyone’s best interest to part ways.

Many patients taking medications and receiving therapeutic help for psychological issues, who begin to feel better, unilaterally decide to stop their psychotropic medications without telling anyone. Because of the “half life” (the beneficial effects of these drugs stay with people for a while after they have been terminated) of most of these medicines the patient often feels okay for a couple of weeks, but then goes back to baseline and only then realizes that the pills were actually helping them. For most people this becomes a wakeup call.

On a personal note, I stopped counting my own pills years ago, although I do carry around a list of all my prescription, over the counter and vitamin pills plus any othercompound formulas. I also wear a medic alert bracelet and make sure that all information is up to date. When I see a new doctor I ask their office to make a copy of my list for my chart; this saves me time completing all this new patient information. It also empowers me to have this part of my journey under some control.

Even supplements need to be reported because of various drug interactions. Your pharmacist can at times be your best friend. Be careful, and make sure the lists are complete. Your doctors will welcome your lists and proactive involvement in your life. Having a good working relationship with your doctors helps your journey on many levels. Make sure to keep your lists of medications up to date.

On a recent Caribbean cruise I skipped the required demonstration for life boats; I know this was not right, but all my luggage hadn’t gotten to the room, and I wanted to make sure I had all my medications prior to leaving port. I remember thinking

“How will I ever be able to carry all my meds with me on a life boat?” I guess I could bring only some of them, but we would need to be rescued quickly! I chose to conjure up how to carry themwith me at all times. With these illnesses we don’t have the luxury of taking things for granted. I prefer to not think “gloom and doom” but rather to be rationally optimistic. Being proactive in my treatment is critical, as is being compliant.

Okay, so how do we ever get used to it? First, remember “Whatever happens, don’t get upset. Think about what could have happened that could be worse and be grateful that didn’t happen.” (That was one of my late grandmother’s favorite expressions.) There are actually many ways to view things.

A favorite cartoon I used to post in my office had four parts to it. Each part contained a table with a glass partially filled with water.  The first guy walks by and says, “Oh, the glass is half full.” The second guy walks by and says, “Oh, the glass is half empty.” The third guy walks by and says, “Oh, there’s a glass with some water in it.” And, the fourth guy walks by and says, “Where’s the cheeseburger?”  We always have choices, even when we do not appear to have them. Sometimes we do have to think outside the box, but keeping our doctors in the loop will always work to our advantage.

The point is there are different ways of looking at the same situation. Humor does help, as does deflecting some negative things. Meredith Vierra (who has recently replaced Katie Couric on the Today Show), married her husband Richard even knowing he had MS and that there was no way to predict his chronic and progressive illness.

When still able to commute by subway to his job as a TV producer, Meredith was questioned by a neighbor “concerned” about Richard’s gait. The neighbor was relieved to hear he had MS since she had thought he might have a drinking problem!

Then, as he describes in his book, he was blindsided by colon cancer. The book does make interesting reading. It shows the differences between chronic versus acute illness. With chronic illness every day is a challenge, but some days are less challenging than others.People are often at a loss as to what to say to us. Their favorite expression seems to be “You’re looking well; you must be getting better.” Yea, right–if they only knew, but they don’t and probably can’t understand.

Then again, if you believe them and are feeling better, this may reinforce your own feelings about not wanting to take all those prescribed medications, or you may want to cut back on the dosage without telling anyone.

It can be so frustrating to deal with people with good intentions who don’t understand. We have choices with these people. We can either try to explain our situation until we are blue in the face (kind of like trying to convince a brick wall) and use up our positive energy; we can say “thank you” and not be overly sensitive. We can tell them “it’s the make up, the haircut” or whatever.

We can have note cards or papers already made up with explanations, and even pictures of our diseases, to save us from explanations if we believe we need to explain. The options are endless.

Whatever you decide to do, make an informed choice; do what will be most positive for you and where you are both physically and psychologically.

Remember, people with other diseases like thyroid problems, Type 1 diabetes, heart and lupus patients are also taking medications daily. Keep taking your medications unless your doctors make changes, but you can take charge of your life with meditation, exercise, and healthy life choices. This way the pills are not running your life; they are simply part of your life and journey with this rare and potentially deadly illness.
In other words, do not allow yourself to be defined by your illness and medications; be the best you that you can be, with the disease, pills and treatments as just part of your identity. It is up to you how to best live your life, but if you are part of the team with your doctors, caregivers, support group, etc.

Be a co-pilot and not just a passenger, you are playing an active role in the life you have been given. You are not just a statistic: You have the ability to empower yourself. This is not a passive role.

As a psychologist I believe strongly in the mental health aspects associated with serious chronic illnesses. I will continue to recommend a psychological evaluation at least annually, like other health-related issues.
So, you can choose to be sick and tired of being sick and tired, or you can be grateful to be alive and make informed choices about your life. You can make informed choices about how to live your life to your (newly defined) potential.

One anonymous quote I keep around my office is: “Happiness about my living situation is something I can decide ahead of time."

Whether I like my home or office doesn’t depend on the paint colors or how the furniture is arranged. It is how I arrange my mind. And, we all have the ability to rearrange our minds. This is empowering.

Enjoy the fall, as nature shows us the seasons. When those beautiful leaves fall from the trees, we know that those trees will be barren during the winter, except for snow and some beautiful winter wonderlands.
We also know that new leaves will appear miraculously on those trees again in the spring and summer. If you live in certain warmer climates you may be lucky enough to have those leaves, flowers and fruit all year long, but renewal is universal.

As always, questions, comments, and ideas for future columns are always welcome, This e-mail address is being protected from spam bots, you need JavaScript enabled to view it