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Chronic Snarkopolist: It’s all in the Wrist

Post Published: 21 September 2011
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Category: Chronic Autoimmune Conditions, Chronic Snarkopolist, Column
This post currently has 3 responses. Leave a comment

 

Hello again my loves!

I am returned from my own doctor appointments and vacation. Let us never be apart this long again! I missed you!

While I was gone I thought a great deal about the intersection of being a patient and caretaker. I tried to find similarities and where they fit in and what I realized more and more is that they are uniquely difficult in their own ways.

They each require of us a certain vulnerability and strength. It is hard to ask for help either way. It is difficult to admit when we need help. One powerful realization came to me though, is that is that it is far easier to advocate on behalf of someone I love and care about than to advocate for myself.

And this is perhaps where being a patient and being a caretaker splits.

When I ask for pain medication for my father, no one thinks I am a drug seeker. They think that his suffering causes me to suffer and that I am a good daughter. If I speak back the dates they realize I am only trying to get him to his appointments on time. Again, a good daughter.

There is a great deal of emotional pain in being a caretaker. And often that drives my desire to care for and deal with what is happening. I want things to go well. I want to make them right.

When we are patients and we advocate for pain control or symptom control, it is harder. We DO look like drug seekers or we simply look like we are not trust worthy. And we do it all without understanding why it is happening. We do it by navigating WITHIN our symptoms and through them, not outside of them objectively. I had that experience once again recently. After years of great relationships with my doctors I accidented upon a doctor who didn’t know me and overlooked my chart. I had to remind her to read my chart and I had to use YEARS of my own expertise at handling medical expertise to deal with HER attitude of superiority and bad behavior. I had to remind her that if she interrupted me she wouldn’t get a good history. I had to be better than her and SHE was the doctor. I realized that most patients are afraid, and confused, and don’t have this when they are first beginning.

When there are emotions here, they are often frustration, fear, and anger at being misunderstood. These are so different from the compassion that I feel as a caretaker. And of course, as patients, we are navigating from the place of FEELING thrown away, from a place of dealing with what has already happened in the past. And we are dealing with our own emotions of dealing with the grinding place of going through our own illnesses and family dynamics and friendships. Our fears of loss, abandonment, relationship and finance issues. Will I be as creative? Will I work again or as effectively? Will I be as pretty? When will I be ME again?

It is impossible to effectively communicate this to a doctor. And so we don’t. We just sit there hoping they get it. But if they have never been patients we let them be “experts” in illness but not experts in any type of emotions or human interaction. So often it is US, the patient, who has to go the extra mile to form the relationship we want.

It is not fair but it is true. I have often reached out even when others are not being fair to me. I have swallowed words that went unsaid. I have created a pattern of LISTENING or humor when it was the last thing I wanted to do. It is NOT the way it SHOULD BE. But is the way it WORKS. And YES it makes me angry. Especially when the power lies with my doctor to do so. But I want my health to WORK. And I don’t know any other way than to be as effective at using what I know and communicating well. And often that means, not being as understood as I wish, but being take care of as a patient. This is especially true for specialists or consults that will not be longterm.

Perhaps I am a better caretaker and advocate for the people I love. No one teaches us how, but I have been a patient for a long long time. And I have come across many scenarios again and again. And in order for me to even remotely be taken seriously as a patient sometimes I have had to be or act in ways that were very foreign to me. I have had to remind doctors they were my champion. I have had to remind them why they went to medical school by when they didn’t want to have a “difficult case.” Or sit quietly and meekly. I’ve ignored it when they wouldn’t look in my eye or not shaken my hand. (I’ve allowed they might have had a bad night or perhaps they have their own rough lives. I’ve given them benefits of the doubt that they often have NOT given me). I have had to say thank you for listening to me when they interrupted me dozens of times, rather than get angry at them (which is what I was doing on the inside). And really, I’ve been tired much of the time. And it was NOT fair to make me do so much of the work for them.

Doctors often say they are “patient centered,” but I don’t know if they realize how much work it takes their chronically ill patients to have any type of relationship with them. I don’t think they realize that effective communicating is difficult for any adults. Illness ads a layer of complication to our dialogues because it creates both vulnerability and need to the power dynamic that is already there. I have had doctors say, “there is nothing I can do for you.” And I have had the same specialist (different doctor) create amazing resolutions to my health issue. I have had doctors disagree with each other but take it out on me. And the entire time I have had to learn how to handle it and I have not appreciated it or how it felt.

Similarly, no one tells us what to expect from doctors. Some who will be amazing and wonderful and create with us healing relationships. And some who will treat us with disdain and further make us tired within the walls of our already amazing unspeakable amounts of strength we conjure each day just to get out of bed. This is what we navigate as patients. And this is what I’ve been thinking about.

Which one is more important? Neither? All of them. All of them exist with in my life right now. All of them inform how I react and think. And I deal with them and navigate and clearly hold on to and put my energy into the positive healing relationships. And work hard to learn from and avoid in the future the bad experiences.

What about you? Which matter more to your life? Which have created more of an identity in your life? Which are harder to bounce back from? Do you smile when you think of your positive physician relationships or sting from the negative experiences? They are all unavoidable. Is it harder to be a patient or a caretaker? Please tell me! I must know!

I will see you same time next week! Kiss kiss!
-Melissa

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3 Responses to “Chronic Snarkopolist: It’s all in the Wrist”

  1. Linda B Reed says:

    WONDERFULLY stated and very heartfelt, Melissa. I can relate SO much to what you say. I am also the caregiver for my mother, as well as “the rock” for my little family. Sometimes, it is even more difficult than others when doctors, friends, family, etc., who are supposed to support and understand, really don’t get it or take the time to try! Thank you for putting into words how so many of us with a chronic disease feel! Hugs, Linda 🙂

  2. Anne Taylor says:

    This is so insightful. If my Mum had not learnt to navigate the system I would not be here today. I had a slow growing brain tumour when I was a teenager and you would not believe the way some of the many doctors dismissed my symptoms as just ‘ my age ‘ I learnt how to navigate the system then( in the UK) and I have made a point of trying to teach my children to do the same. Doctors can be wonderful but some are arrogant and dismissive and often their receptionists/ support staff are even worse. It’s exhausting sometimes trying to get the best support you can for someone you are caring for but if you are the patient and don’t have someone to do that for you it’s do much harder.

  3. Anna says:

    Thank you Melissa. It’s hard not feeling like yourself anymore and sometimes its overwhelming and exhausting having to go that extra mile for those relationships. I’m tired and I’m pissed and I’m so over trying to be my old self. I’m still learning who my new self is and as for my caregivers, I’ve been lucky. On occasion I get someone new who says , ‘Oh, just thyroid?’…I’m now so used to re-stating my chart that I’ve become callous. Still trying to navigate…

    xoxo

    Anna

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