We are going to cover three main areas in this article: explaining Cushing’s, asking for what we need and managing others reactions.
Many have said that it has come as a relief to finally KNOW what is going on, to have a diagnosis and a course of treatment outlined. No, we are not crazy or lazy. But where do we start when attempting to convey this journey, diagnosis and its impact on us? How do we articulate to others what we need?
Our lives are composed of different social groups; our partners, family, close friends, acquaintances, co-workers and others that may be on the fringe of our lives. I like to think of these social groups in terms of a bullseye. The outside circle illustrates those we know, perhaps not extremely well, and involves the largest number of others. The inside circle is the smallest and represents those with whom we are closest.
Our approach to explaining Cushing’s may differ depending on how close we are with the other person. We do not need to tell everyone we come in contact with, everything about Cushing’s and its impact on us. In other words, people are different in their need to know. There are those we want to know and others we want or need to understand our personal journey.
First, let’s address explaining what Cushing’s is.
I like to emphasize that it is a rare endocrine disorder. Before I even use the word Cushing’s, I clarify this so that others can already feel a bit informed. Then, when I use the word Cushing’s, they already have the sense that this is rare and that is why they may not have heard of it. I find that this cuts down on the confused blinking that often comes after I use the term Cushing’s. Depending upon who I’m telling and their need to know, I may even stop after “rare endocrine disorder” to prevent my own frustration when they tell me they knew a dog once who had Cushing’s.
Second, I say, “I’d be happy to answer any questions you have.” Some will want more information and some will not. For those that I want to have a more in depth understanding, I direct them to the CSRF website, specifically the Patient Pamphlets, Understanding Cushing’s – The Basics and Tips for Caretakers. Or I may print some of those items and hand them to others. Once they have read this, they may ask me more questions or choose to peruse the website further. I prefer this to someone making a mad dash to Google as that can be overwhelming and in some cases, results in misinformation.
After treatment, many have said that their friends and family think they should immediately be feeling well. It is well recognized that recovery from Cushing’s can be slow and difficult and that during recovery, most patients will experience limitations. How do we explain that to others?
Again, I like to point to the pamphlet on Recovery, as it presents information from both patients and doctors. Information from others takes the onus off of us to explain everything and can lend credibility to what we are experiencing. The other thing I’ve used often to explain my limitations and fatigue is a deck of cards. I start the day with say, 10 cards and I need to prioritize the things I do because when I run out of cards for that day, I cannot do anything else. If I spend all of my 10 cards on one day, the next day, maybe I start the day with only 8 cards.
Then, there are the issues of depression, low self-esteem and poor body image. This is not the stuff we share with everyone. The center of the bullseye mentioned previously is also a circle of trust. The center is the smallest and the area in which I trust the most. It may only have 1 or 2 or 3 people in it. These are the people with whom I may share my sadness, anxiety, panic and poor self–image. These are also the people that I make sure I apologize to and explain my reasons, if I’ve had to cancel an engagement, or been short tempered. Of course, the people we want to understand may not ask. This leads me to our second area, how to ask for what we need.
Asking for What We Need
Asking for what we need can be complicated by our own discomfort in doing so, our changing needs and our audience’s motivation level. In general, most people do need to feel useful, necessary and competent. Thus, you may have others in your life who truly want to help. Most of them will ask, “What can I do?” There is nothing wrong in accepting help from others; it does not mean we are weak or incapable. If someone offers help, graciously accept it. Others will not ask how they can help.
If I can clearly tell someone what I need and how they can meet that need, this is step one. I may say, “I am too tired to do that load of laundry. Do you mind putting the clothes in? Or, “I am too tired to make dinner, will you do so?” Or simply, “I’ve had a bad day and I need a hug.”
Crucial to asking, is communicating appreciation. People need to know they make a difference. “Thank you for doing the laundry”, “thank you for making dinner without my asking” and “thank you for calling just to check in.” During times when we are not sure what we feel or need, I recommend journaling to clarify our own feelings and needs so that we can better ask for what we need. A journal doesn’t judge, doesn’t talk back and doesn’t ask for clarification.
Don Miguel Ruiz in his book, The Four Agreements states that the first agreement is to Be Impeccable with Your Word, “to use your energy in the direction of truth and love for yourself.” An example of this may be stating, “I am doing the best I can today”, rather than “I’m so fat (or lazy or negative)”. Learning to talk to ourselves gently uses our energy in the direction of truth and love. We may even choose to pass on that thought to others when asking for what we need: “I am doing the best I can today and I just can’t do anything more, could you help me?”
Managing Others’ Reactions
Third, how do we manage others’ reactions? Those who are supportive and available are simple to manage. We communicate our appreciation. We give back as we are able. But what about those who are blaming, judgmental or who disappear from our lives? We often put the blame for this on ourselves. In other words, we have a tendency to think that if we explain things well enough, others will understand. That is often not the case as different people look at illness differently and some will not be able to see your experience through.
The challenge is not to personalize their behavior. Ruiz, in The Four Agreements also stresses “Don’t take anything personally” as the second of the four agreements. He states, “Nothing other people do is because of you. It is because of themselves. All people live in their own dream, in their own mind; they are in a completely different world from the one we live in.” This is easier said than done but is a good starting place for us to challenge ourselves; write on a sticky and put it on the mirror: “DON’T TAKE ANYTHING PERSONALLY.”
This agreement is followed by his third, Don’t Make Assumptions. When others react, we tend to immediately personalize this. But it is not about us. I’ve had friends leave my life because they couldn’t handle the diagnosis. One actually was able to explain that my diagnosis triggered memories of others whom he had lost and therefore he couldn’t deal with my struggle. While I was sad, I also acknowledged his self-awareness and courage in telling me so before he left my life. Others may see illness as a constant reminder of their own mortality.
Finally, Don Miguel Ruiz leaves us with his last of the Four Agreements, Always Do Your Best and he clarifies that “..your best is never going to be the same from one moment to the next.” “Your best will be different when you are healthy as opposed to sick.” “Your best will depend on whether you are feeling wonderful and happy, or upset, angry, or jealous.” And finally he says, “Do not be concerned about the future; keep your attention on today, and stay in the present moment.” I like this as an ending point because we do not want to lose any more moments preoccupied with the past or future. How we explain Cushing’s, ask for what we need and manage our own and others reactions will change daily. All we are called to do, is our best.
“To keep a lamp burning, we have to keep
putting oil in it.” Mother Teresa
By Dawn Herring, LMFT and Cushing’s survivor, Winter, 2016