Monthly Archives: September 2010

Terry Wolinsky-McDonald, PhD (PV patient and IPPF Board Member)

The holidays and end of year are nearly upon us as I write this article.  This time of year brings so many different and conflicted feelings for most people, usually very personal and emotional.  As noted previously, while so many look forward to so much, many people have bittersweet memories and difficult standards and goals for which to strive during the holidays and into the New Year.  It is a time for remembering activities and traditions of previous holidays but also the losses (health restrictions, jobs, life styles and people). For some there have also been improvements in health and treatments and new traditions.  Others hold onto the more troubling thoughts and feelings and have great difficulty moving on.  Sometimes the illness itself is not responding to treatment yet or is being stubborn and brutal.

Tears often represent unresolved sadness and grief, in addition to actual clinical depression.  When living with chronic illness patients and caregivers can’t help but experience, a mix of depression and anxiety from changes in the status quo.  After all, chronic illnesses don’t go away, which is why they are called chronic to begin with.  Seeing family and friends, not seen often, during the holidays often brings people into the position of being seen as SICK and HELPLESS or being told they look BETTER and so must be doing/feeling better.

And, don’t forget that tears can be positive, too.   I often tell patients that tears are allowing toxins to leave the body; who doesn’t want a less toxic body?  People also cry when happy or just plain sentimental.  I have one friend who never ceases to make me laugh.  I keep telling him to take his act on the road!

Sometimes it is just easier to not discuss at all since “chronic illnesses” seems to be such a mystery to so many, especially a rare or ultra rare disease. One person I know actually carries around a few copies of the dictionary definition of chronic in order to avoid explanations. If there is loss of energy it may feel like running a marathon just getting together with family and friends, even when not trying to “host” the holidays or a get-together.  Travel can feel like a triathlon; sometimes just getting out of bed, let alone the home, can be excruciatingly difficult.

The essential ingredient in getting through this is acceptance; think of acceptance as the main ingredient in the recipe.  If unable to get to acceptance, try putting hurtful feelings on hiatus in order to get through difficult periods.  I do not advocate pushing yourself beyond your limits, but one thing psychologists learned from the “behaviorists” (Skinner, Watson, et al) of the 1960’s is that one does not have to feel wonderful or have tremendous insight to effect changes:  making changes, even small ones, can actually make you feel better.  For example, just going to a gathering may make a person feel better, even if there is a need to leave early.  Getting more dressed up, and seeing oneself in a mirror, allows the person to see themselves more as they once were and may again be.

Fears of the uncertainty of it all are real and often keeping anxiety high or ever-present. With chronic illness one never knows what the next day will bring.  Expectations of what one can or cannot do may be unrealistically high or low.  In either case, anxiety may remain a constant.  Some people even have actual panic attacks, where they have trouble breathing and chest pain, simulating a heart attack.  If on high doses of a medication like prednisone, life will feel like a roller coaster . . . because it is!

Medications can help, and are often necessary. Therapy can teach new ways of coping that will be absolutely necessary to get back in (limited) control and to accept to help move on.
Sometimes techniques can be learned in therapy or from self-help books.  I am not a great fan of most self-help books, but new ideas and ways of handling things will be helpful, however they are learned.  When new circumstances take people back to old unresolved events or issues that is when psychotherapy will be absolutely necessary.

Fortunately the stigma once attached to the need for psychologists and psychiatrists has changed for most of the population.  Asking for help in just understanding why one feels as they do is the first step in taking this course.  The support and understanding of others, your support system or lack of one, is never to be underestimated.

So, where are the cheers to come from?  How about improvement in the illness’ impact, adjustment to this new life, just being able to sit comfortably or to eat and enjoy food again, feeling more stable, being in partial or full remission, fewer or less harsh drugs?  Any or all of the above and so much more are cause for celebration.

What are my recommendations for the holidays and New Year?  Take a lot of pictures to help create new memories; try at least one new thing; let the people you love know how much you love and appreciate them in your life; smile more; let go of small disturbing things; say hello to someone you don’t know.

Cheers to all for a happy and healthier New Year.  Remember, the IPPF Annual Meeting will be in Detroit in 2011 – May 20-22 – a time to learn from the experts, meet or reunite with others, and to feel connected.

I hope to see you there!