Before Parkinson’s (any chronic illness, we all “lived like water flowing down a hill..going in a single direction until we splashed” against a rock which has forced us to find a new path.
A Relationship by definition is the way two or more people are connected but more importantly how they behave towards one another. As long we live in this world, we will always have relationships some of which are closer and more intimate than others. These latter ones are the ones that become more deeply impacted and can be totally uprooted by our behavior, the choices we make and the things that impact our lives.
We know that no two people are ever alike and the fashion in which we deal with stressful situations is no exception.
This is the time when boundaries will be pushed to the limit.
So it should not be a big surprise that when major life stresses occur in our life’s any and all relationships will be put to the test. The hardest hit are always the ones closest to us like our immediate family and close friends.
I too have lost relationships of decades because the person I thought would understand my shortcomings would understand. Although, the losses hurt and the relationship mourned I had to come to terms that my health was more important.
How do we keep our most valued relationships from becoming part of an UN-salvageable shipwreck?
Setting appropriate boundaries.
We can’t expect to have good relationships or understanding of our needs; much less be able to tell our friends and family what we like to get from them to help us continue being the friend, partner, lover, sister, and mother. Although, these will have to undergo some type of modifications to allow for life’s changes in both parties.
Discuss gently with the people you love, the specific issues you have and then try to find ways to get around these issues. For instance, I tell my friends and family that in order to protect my limited energy/time that may be needed for a higher priority, I reserve the right to cancel a commitment especially if I am not well.
Sometimes however despite our best efforts casualties will occur and we must learn to let go.
When we set boundaries saying what we will and will not accept in our lives it forces the other person to evaluate their own boundaries.
How you handle these strains depends on the intimacy of relationship and how valuable that friendship etc. Some relationships can’t be dissolve such as familial ties but can become estranged with lack of communication.
I am sure all of us have experienced strained relationships during our lives particularly after receiving a Parkinson’s diagnosis. At times is hard even for us to accept our own illness much less for others who are mere spectators to fully understand our condition as outsiders.
For instance, my close friends know that my life changes day to day and so in making social plans we have learned to give each other leeway in changing plans last minutes as long as we both get the same opportunity. Equally we are all open to spontaneous planning to gather. In my case, people that have trouble accommodating to this my new life and insist on making plans way in advance and or in getting upset if things change last minute have been for the most part excluded from my social circle. Similarly because of my ups and downs and loss of voice along with all my other demands, I have adopted communicating with my special friends and family members for the most part via text. This way we are constantly in communication. However, there have been those that insisted and got upset if I was not able to speak directly with them at the time they need me without understanding my own issues and did not want to compromise as to how and when we spoke. These types of demanding behavior even from long term friendships have resulted in breakage of a friendship. But like a bad hair do you must simply accept it and know that you will get another chance to try something new and perhaps even better.
Because we don’t live in a vacuum all of our actions have consequences. You must speak up and let the person know how you feel and is up to that person to respond positively or ignore your circumstances. If that person makes no effort in meeting you half way perhaps is time to rethink that relationship.
Develop healthy boundaries say YES to good things and NO to bad things! Speak your mind gently without feeling guilty but remember that those around you have the SAME right to decide what they deem BEST for them!
all rights reserved by Maria De Leon MD
Aside from spending time visiting my many physicians this last couple of months and sleeping incessantly, which could be misconstrued as a form of hibernation, I have begun a women’s class on boundaries. This class has been fun and challenging at the same time particularly in regards to the physical realm.
Of course, I am always thinking about the relation and interchange of one aspect of my life to another. As I have been preparing lessons for my students, I realized that these same rules of good boundary setting could be applied to those of us living with Parkinson’s disease.
If you lived long enough, you have undoubtedly understood the importance of having clear boundaries (limits, clear likes and dislikes etc.) in order to have a healthy, happy life. This means knowing exactly when to say yes to things and when to say no. For instance, many of you know how involved I am with the Parkinson’s community thus I had been looking forward with great anticipation to traveling to Portland for this past week’s World Parkinson’s Congress. I had my room and flight reservations all squared away since the early part of the year. Then my health took a bit of turn …as I began to feel better the question was “should I go or should I stay?” (With that little giggle running through my head). Needless to say that during the moments of feeling well, I was completely ready all for another great adventure which included meeting so many new and old friends.
Yet, I had to be realistic about my health. In the end the toll on my health, assuming I were better to fly such a long distance, would not be worth the experience. Learning to say ‘no’ to the seemingly good things that can potentially be harmful in the long run is an example of having clear defined boundaries. Plus had I gone, I would have missed all the drama and excitement of my daughter being asked out to her first homecoming dance. These moments are priceless.
Seeing the excitement and drama unfold throughout the week led me further to think about how we cope and live with PD particularly in the context of raising children and teaching them appropriate boundaries.
We all know that having kids is a difficult thing – each time you think you have mastered a particular situation there comes a curve ball. We all worry about raising well- balanced, happy, self- reliant individuals. Those of us with chronic illnesses like PD know that the job is even tougher when we don’t even have enough gumption to shower or get dressed some days.
What worries me is that sometimes especially because of our illness and fluctuating symptoms we give mixed signals to our children making them confused due to inconsistent limits. One minute we may require them to grow up faster act like adults, be the parent, the caregiver, and other times to simply be a loving child. I ponder about the influence we might exert on our kids as our mood see-saw according to our pain levels and other motor & non-motor fluctuations. Are we being loving and tolerable to their needs one minute and harsh or overly critical the next?
If the answer is yes- we may be guilty of inadvertently causing our children to grow up being guarded.
- In addition, specific traumas like dealing with a debilitating illnesses such as PD may lead to a questioning of 2 basic principles needed for kids’ essential growth into healthy individuals.
- One is that they have control over their lives
- Two that the world around them is a relatively safe place.
If we are not careful, they may grow up feeling these essential foundations are distorted or shaky and thus feel that they have no say in their life’s or situations. The same thing can happen to some of us who live with chronic disease in context of being able to advocate for ourselves. This feeling of lack of control can lead to poor health care and a less than optimal quality of life.
There are two important rules to healthy boundaries that will help us experience our world differently especially when we seek care for our chronic diseases.
First, don’t put up with doctors or healthcare professionals who are jerks because they don’t offer respect to others while commanding it themselves; but remember that we as physicians are human too. In all honesty most of us are really trying our best and want to help. However, in these last few weeks as I became more frustrated after seeing several new physicians, I had to take responsibility for the way I was feeling. I had to revert to my role as a doctor to remind me how I it was that I felt and treated chronically ill patients (those of us who not only have an extensive medical history, long list of medications with an equally long list of physicians and specialists they have or are currently seeing).
Although, I considered myself to be better than most at dealing with patients with chronic diseases partly due to my own personal temperament- thriving on challenges and solving difficult puzzles. Yet, even I remember being extremely frustrated at some occasions with a couple of Parkinson’s patients whom I could not make better try as I might. This frustration and powerlessness sometimes related to patients as if I were angry or uncaring. At other times, it was difficult to convey to patients who wanted a quick response (for it’s our human nature as well as a natural expectation when you live with chronic pain or a disease permeating all aspects of life) for which I had none. I felt that same disappointment, as I am certain my own patient’s experienced at times, over the last few weeks.
Thus, I had to remind myself that it was their first time seeing me and they did not have the breadth and depth of knowledge I possess having lived with my disease for 10 years. It is important to keep in mind that even when we see doctors who are specialized in our own chronic disease such as PD – they have not lived in our shoes. They have the general understanding of the complexities of a disease like PD but have no insight into the daily intricacies of living with it as it happened to me – is like knowing everything about living on planet earth vs. actually living here. Such was my knowledge of PD until I became a patient of the same.
I determined that people like us because of our extensive knowledge are the knives easily tear the veil unmasking the illusion of physicians being in complete control and able to FIX things (people) and cure diseases. I know what being a doctor is and know how they feel because I am a doctor 100 % of the time even when I am trying to be a patient which has been more often as of late. I know that because of my knowledge, I too scare my doctors a lot of the times. Knowing that we scare health professionals is the first step to a successful patient -doctor relationship. This is the second rule- respect for the practice of medicine. This also means don’t get easily upset if they forget some important aspect of your life because they have thousand other patients to see. Plus, they may be tired from being up all night on call or simply forget because they are human too. Remind them gently if it is important otherwise let it go.
In order to forge a long lasting meaningful relationship with your physicians. Remember respect and take responsibility. Don’t come in the first visit too strong knowing everything and demanding things. This will surely break a relationship before it begins. Your knowledge is a great asset as you build the relationship but your knowledge and high expectations on the first visit is like showing a possible new mate all of your flaws on the first date. What do think are the chances of having a second date?
Finally, as I said before never have more than three complaints at a time otherwise it will diminish the effectiveness of your visit. Do assume responsibility and ask for more frequent appointments to have your problems answered. As any relationship it is a give and take and the longer it last the more familiar the doctor will be with you and be able to ask for your input more and acquiesce to your needs and give you freedom to ask reason when they seem frustrated (which the majority of time is not related to you but rather a feeling of inadequacy on our part).
Happy trailing and pass it on for better long term patient- doctor relations everywhere.
all rights reserved – Maria De Leon MD