Category: self-advocacy

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Alzheimer’s Disease

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This last week was a difficult one, and yet at the same time, not unexpected. Over the last few years we have watched my Dad’s cognitive ability begin to decline. He’s struggled with memory issues, often confusing my eldest daughter and myself. He’s repeated things he has told us and experienced confusion over timeline of events. He’s ageing; my dad will be turning 85 years old in July and over the years you simply attribute the symptoms to the fact that he is getting older. But, he began having these symptoms with more regularity, losing things, poor judgment, having angry outbursts over things he would never have in the past and becoming more withdrawn. There were a couple of attempts bringing it up to his PCP, but it was basically disregarded as benign and merely one of the symptoms of getting older. However, after a considerable amount of discussion, he agreed to see a neurologist who confirmed our suspicions of Alzheimer’s disease. As difficult as such a diagnosis may be, he now has medication to help improve his quality of life and we are better armed to help him navigate the years ahead. If you have a loved one who is struggling, don’t chalk it up to getting older. Educate yourself and be their advocate so that they can get the help that is needed for the best life possible.

Symptoms of Alzheimer’s

Memory

  • repeat statements and questions over and over
  • forget conversations, appointments, events, and not remember them later, often putting them in illogical locations
  • getting lost in familiar places
  • eventually forget the names of family members and everyday objects
  • have trouble finding the words to identify objects, express thoughts or take part in conversations

Thinking and Reasoning

  • causes difficulty in concentration and thinking, especially about abstract concepts or numbers
  • multitasking becomes difficult
  • challenging to manage finances, balance checkbook or pay bills on time.
  • eventually an Alzheimer’s patient may be unable to recognize or deal with numbers at all

Decisions and Judgment

  • there is a decline in the ability to make reasonable decisions and judgments in every day situations. Ex. a person may make poor or uncharacteristic choices in social interactions or for the weather
  • it may be more difficult to respond effectively to every day problems, such as food burning on the stove or unexpected driving situations.

Planning or Performing Familiar Tasks

  • once routine activities that require sequential steps, such as planning and cooking a meal or playing a favorite game become a struggle as the disease progresses
  • eventually Alzheimer’s patients in advance stages of the disease forget how to perform basic tasks such as dressing and bathing

Changes in Behavior and Personality

  • brain changes that occur in Alzheimer’s disease can affect moods and behaviors
    • Depression
    • Apathy
    • Social Withdrawal
    • Mood Swings
    • Irritability and Aggressiveness
    • Changes in Sleep Habits
    • Wandering
    • Loss of Inhibitions
    • Delusions (believing something has been stolen)

My Dad still has the ability to do many things. I think that is possibly one of the most insidious aspects of the disease because it masks its presence and allows those closest to the person to hang on to the hope that it is only old age. These abilities are clinically referred to as “preserved skills,” and they are defined as: skills which are preserved for longer periods, even while other symptoms worsen. Skills like: reading, listening to books, telling stories, reminiscing, singing, listening to music, dancing, drawing, or doing crafts.

Alzheimer’s is not only difficult for the patient who is experiencing the disease, but also those closest to him; especially those caregivers. The role of caregiver is often the most difficult role, without any time off or help. Those who are in this position should know that they are neither alone, or without resources for help. It is important that you reach out for help if you are feeling overwhelmed, or simply need to talk to others who are dealing with the same things you are. There are many support groups for family and caregivers of patients with Alzheimer’s, which is crucial as you navigate the difficult days ahead.

Links:

Alzheimer’s Home Safety Checklist

Alzheimer’s Association

Community Resource Finder

Alzheimer’s and Dementia Training and Education Center

Alzheimer’s Caregiver Support

Alzheimer’s Support and Resources Tools

What Body Shaming Does

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I recently watched Valerie Bertinelli bear her soul on an Instagram post in direct response to a body shamer. [Watch the video below.] The post’s objective is to fight back instead of just pushing down those hurt feelings. Some people will say that it comes with her line of work, or that this is just another case of people being too sensitive. Hell, I imagine there will be people coming to this person’s defense, citing free speech and that she just needs to get over it, but what this is really about is the pain that women and men endure at the hands of body shamers.

Sure, it’s just words and as probably everyone’s mother has told them when they were little, “sticks and stones may break my bones, but words can never hurt me” isn’t exactly true. Words are powerful. If they weren’t would they be such a persuasive tool? Words are used to convey meaning and sentiment in so many areas of our lives. You have Pulitzer Prize winners in literature and poetry. Words are used by our world leaders and politicians to persuade you to vote for them as well as unite us. Words in stories can be brought to the big screen and they can be powerful or funny. We can use words to convey love and hate and hurt towards another person and it is powerful.  

Today, our words are being exchanged with one another via text, Twitter, Instagram, Facebook and hundreds, if not thousands, other, various platforms. This has given bullies that we once only encountered on the playground at school or organized sports or other extra-curricular school activities, another avenue by which they can torment. And the best part of this for them is they never have to engage with the object of their hurtful words. Many times, they do not even know the person they are attacking. It’s just someone on the computer and it is forgotten that they are human and have feelings and a heart.

Body shaming leaves scars. It has a profound effect on those who have endured it. It crushes self-esteem and confidence; it causes major stress which can then have an even deeper effect on the body as a whole; it can even lead to bulimia and/or anorexia or another eating disorder. It’s difficult to find “body shaming effects,” when you plug it into Google, but you’ll get thousands of possible results on “how to lose weight,” “decrease obesity,” or just about anything you can think of that relates to getting thinner.

But I know these things mostly because they have touched me and not even to the excess it has others, and the effects have been profound and long-lasting. I was an athletic kid who participated in cross-country and gymnastics, and who had dabbled in tap dancing and ballet. My earliest memories, however, have always been the uncomfortable way I felt in my own skin. My mother, who had been overweight as a child and into her youth, was constantly dieting. Even now, as she approaches her mid-70’s, she is always looking at new ways to stay trim and/or lose weight. She imposed this way of thinking on myself and my father who has always had that “dad belly.”

I can recall distinctly the way she would check my waistband on clothing to see if it was getting too tight and it had nothing to do with seeing if I needed a new pair because I was growing out of them. It was to remind me that I needed to watch my weight. I didn’t want to get fat. No one liked fat girls. As an adult, I understand my mother was trying to be the best mother she could be and was trying to protect me from the ridicule of children, who can be cruel. But, because of the kind of person I am, already prone to obsessive thinking as well as obsessive-compulsive disorder, it was a catalyst for how my pre-teen years and teen years would evolve.

The first time I was body-shamed was in Middle School and it wasn’t your typical kind of body shaming. I wasn’t called “fat,” I was objectified by the boys who snapped my bra and tried to grab my ass or slap my ass because I had hit puberty early. I had breasts and curves and while I never thought of myself as pretty, especially as a pre-teen, it seems I made their hormones explode. I didn’t want to look the way I did. My friends didn’t look like me and the way my body had changed, the only way I could think of to change it was to lose weight and throw myself into athletics. In my pubescent mind, I thought I could undo mother nature.

Camp, would be the second time I was body shamed. My athletic body didn’t evolve the way I thought it would. Instead of being lean and lithe, muscles had given my small frame a bulky appearance that I despised. I had envisioned myself returning to the more, slender frame of my child-self with a boyish figure rather than to this feminine, strong, muscled girl whom I did not appreciate. While at camp, another girl pointed at me (we were all in bathing suits during swim lessons and they were comparing ‘thigh gaps) and commented to another girl (in Mean Girls fashion), “God she has fat thighs!” I was wrecked instantly.

I threw myself into exercising and gymnastics. I began restricting what I ate, counting calories and making myself throw up. It’s painful to look at pictures of myself and see this young, very slender girl and know the pain she was going through internally. There was a constant comparison of myself to other girls who didn’t have the same body type as I did and this endless competition to look like them, just so I would feel better about myself. I never achieved it.

When I got pregnant at 19, I had no idea how much it would change my life. Not only the aspect of motherhood at such a young age, but the profound effect it would have on how I felt about my body. I promised myself that I would never let what I went through affect my child and later on my children (who are all girls.) But what I didn’t realize was that while I had overcome a lot, the effects of body shaming would continue until even now at 47. I don’t wear shorts because I don’t like how I look. I’ve gained a lot of weight because of chronic illness and pain, my highest weight being 190lbs and my lowest and current weight now at 160lbs. I always say I’d like to get back to 145-150 which was my weight after my youngest was born. But it’s been a struggle and it’s like when you watch a dog trying to constantly chase its tail, going in circles and never winning. My girls know my appearance makes me unhappy and it hurts me that I’ve never imparted a more body-positive environment for them. Because life is too short to be constantly fretting about how you look. Life should be about the things that make you happy.

I haven’t endured nearly as much body shaming as others. Much of it has been me being self-critical, but I do empathise with those who have had to endure it. Body shaming is so very destructive with lingering impacts. I hear Valerie Bertinelli and those out there who may have been the object of such cruelty and I support you. We don’t need to live in a world with body shaming. As mothers and fathers, educators, family and friends, we need to teach our youth that our appearance is only a tiny bit of what makes us human. We need to show our youth that it isn’t about being thin or pretty but having a good soul and a kind heart. We can change the world, one word at a time. We can also take back our lives by embracing the body we are in and not allowing someone else to try and diminish that.

So, what; You Can Handle It Better

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How it should be.

I’m probably not the only one who has heard variations of the following: “I have terrible anxiety too. But it doesn’t cripple me the way it does you. You need to find a different coping method.” Or “Wow, I have Crohn’s and mine is worse but I still work. Maybe you need different medicine?” One of my faves that I’ve heard in the past: “I have triggers too, but I don’t let them control my life.” There’s more of course, but you get the idea. These comments are frustrating and hurtful in many different ways, but for me at least, it implies that I’m not doing enough and I think that everyone who bears the particular cross of chronic illness/pain and/or mental illness, not only does absolutely everything they can to help themselves but wishes it never happened to them in the first place.

If we had a choice, we’d take healthy body option.

Maybe I am just naive, but I always thought that when you share a specific issue with someone, like an illness, disability or mental health disorder that you kind of join together and lift each other up not criticize, antagonize or bring each other down. We all begin in this place where you feel so alone with your problems and struggles. You feel like no one is seeing you or truly hearing you and without a doubt, no one out there understands. Then, you begin to reach out slowly and carefully to a community that is inhabited by others just like you, living with the same illness and daily struggles you are going through and you feel like you can open up and share things. It feels like a sledgehammer coming down on you when the people you thought would understand, the people you thought you could trust, bring you down and make comments like, “you have to be exaggerating, I have the same thing- worse- and I still run around for my five kids,” or that “you have to be doing something wrong.” I’ve even watched as people on forums intended to bring people together, instead, tear it apart with savage comments about the choice of medicine a person takes (on the advice of their doctor). “You’re going to become addicted.” “How could your doctor write a prescription for that poison.” “You’re better off just hitting the streets for drugs at this point.” This is no joke. I’ve read this and worse; my jaw just about hitting the floor or feeling so disgusted I have left groups.

I write for both the benefit of those going through chronic illness/pain/mental health and to attempt to educate those who do not have to deal with these things and perhaps don’t understand what it is like. I should not have to speak to the community I call my own and tell them that they should not discredit others’ struggles simply because they have been graced with the ability to handle them better or they think they’ve been through worse. That kind of thinking hurts everyone because we are not carbon copies of one another. We’re all uniquely and beautifully human and while there are amazing people out there (you may be one) who can handle the weight of their illness or struggles better, who might even overcome them and eventually inspire others, this does not mean I (or anyone else) is somehow less than because they are still struggling and still fighting every day. Additionally, when it comes to the medicine we are prescribed by our physician overseeing our health, there are some who rely solely on the advice of their doctor and there are others who might investigate further what is best for them. But there are far better ways to handle a conversation about medicine than telling someone they’re going to become an addict. It can cause a person to stress, trigger anxieties you may not know about and possibly abandon medication altogether. How a person decides what goes into their body to help their pain or illness is personal. Unless you have a less alarmist approach, stay out of it.

I have a mouth.

Life is so difficult, even when we are unburdened by the weight of chronic illness/pain and mental health problems. We don’t need to add to those struggles by attacking one another. Instead, we need to support one another and fight to bring awareness to illness and pain that have been ignored for too long. We can do so much good together; we can improve life for so many including ourselves, it seems like the only answer is for people to be more supportive toward each other. We’re all doing the best we can as we navigate the treacherous waters of chronic illness.

Namaste y’all, until next time.

Despite it All

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And here you are living, despite it all. -Rupi Kaur

When you are struggling with mental illness and/or chronic illness and/or chronic pain, life can be overwhelming. Every day feels like a battle with mood or symptoms that keep you from feeling your best. You struggle with guilt over not being able to do the things you once did, or not being able to do them as often, or sometimes, criticism from friends/loved ones who don’t understand this seemingly new person that you’ve become, when in actuality, the imposter was that person they saw before it became too exhausting to put on a façade of wellness. Too, there’s confusion about how some days you might actually be feeling well enough to be a glimpse of that person you were, smile, be happy and people wonder, then, why you can’t be that person all the time. And if that weren’t enough, there are those who will criticize you or question the legitimacy of your illness because you have days where you are happy.

But this post is not about all that. It is about this:

“And here you are living, despite it all.”

If you can, take a moment and consider everything you have gone through in your life. Think about the stress and anxiety you have felt before knowing a diagnosis or the continued stress you are feeling because you have yet gone un-diagnosed; think about all the anxiety and pain your mental illness has caused you; think about all the symptoms you’ve had to deal with because of your chronic illness and think about the physical pain you’ve experienced because of your chronic pain.

You are still here, despite it all. You are alive and important to those around you, and you have gifts of your experience and perseverance that you can pass on to others. You didn’t give up, and even if you did for a while, you were able to push through and continue. These experiences can sometimes be gutting but every day you fight back you are giving yourself the opportunity to live and touch other lives by connecting with them through similar experiences. It doesn’t mean you have to start a blog or try to become an influencer on Twitter or TikTok, but just opening yourself up to the idea of sharing your experience with someone who you think might benefit from hearing it. Sometimes, it can be the simplest act that can save someone from the edge of despair, and because we have been there, we might see the signs before someone else notices.

It’s not always easy to sit down and reflect on everything that has happened to you or is still happening to you and feel good about still being here. There are times where it’s such a struggle and such a painful existence that you wish it were over and yet you fight because there’s that shred of hope that tomorrow or a month from now won’t be as bad. You look for things that bring you joy and peace and you hang on to that for dear life. And sometimes, you are lucky enough to have a few hours, or a day or a week where you feel normal and unburdened by your health. You are able to enjoy things and you are cognizant of that and you savor each and every moment. These are the things we have to pass on to people who find themselves in similar shoes. The hope that is possible. The hope that can be. The hope that despite it all, you will survive and the hope that despite it all you will thrive.

8 Confessions of Living With a Chronic Illness

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Me confessing to you.
  • I Always Feel Guilty: Yes, always. I feel guilty because I don’t visit with people I care about. I feel guilty because I rely on so many people for so many different things. I feel guilty when I don’t cook a decent dinner. I feel guilty because my house isn’t clean enough. I feel guilty because I can’t walk my dogs as much as I would like to. I feel guilty because I can’t do as much yoga as I would like and sometimes, I need 3-4 days to recover from one 30-minute class and that class isn’t hard-core yoga. I feel guilty because my specialised diet forces my husband and family to go without things they enjoy. After all, it would wreck me to cook two meals. I feel guilty because I can’t work. I feel guilty because I can never say to someone that I feel 100% wonderful. I feel guilty because my mental health sucks. I feel guilty and sad because I have passed so many of these genes to my children and they suffer because of it. I feel guilty because I often lie about how I feel, so I won’t worry people. I feel guilty. This only covers a small portion of my feelings, but it can become overwhelming. 
  • I Am Frightened of My Future: My husband is getting close to retirement age. We are steady planning out the future; where we want to live, what kind of house we will purchase and how we’d like to decorate (OK, how I would like to decorate.) We’re both so excited about it and doing things we like to do together, without the children. But when he brings things up, I realise I am terrified. What if I can’t do all the things we’ve been dreaming of? What if I am not there? These are things that could happen to anyone; these are things that have happened to people and I know I can’t predict the future, but I still find the thoughts of my future terrifying. I am a chronic pain patient and with “opioid hysteria” and yes, I will concede there is a problem with certain drugs and those who have abused them because they were misguided by a doctor, there are still those of us who very much need them. But we’re being punished and many have died because they have been left defenseless against their pain and quickly over-run by it. Our resources for pain management because more scarce and I find it as much a tragedy when someone is left to suffer in pain as when someone becomes addicted to the drugs that were supposed to help them. 
  • I Feel Like I am Alone: Logically, I know this isn’t the case. I have friends and loved ones who care about me. I have a truly amazing husband, who I adore and I know adores me. But no one truly gets it. And, while I have many on social media who do understand because they are in the same situation, sometimes you wish you could hang out with someone in that very same place, so you can feel at ease. It’s difficult for me to make plans with people (family or not) because I can’t predict how I am going to feel in the future. It’s always a day-to-day thing and you end up feeling bad when you can’t go somewhere you promised you’d go, or have to cancel plans. Funny thing is, you end up not having to worry too much about it because most people just get tired of it and stop calling and hanging out. 
Me lonely
  • I Feel Like People Don’t Believe I am Sick, Because I Don’t Look Sick: I wish, sometimes, that I looked as sick as I feel- sometimes. The only thing I have going for me is that I don’t look sick or my age. The downside is that no one can see the crumbling immune system that is mine, and no one can see the pain I am in daily, which gives people the false idea that I am just fine. When I remind people that I hurt, or can’t do it because I don’t feel well, I feel like there is a tiny part of them that doesn’t believe me or thinks I am doing it just so I can get out of something. This generally leads me to go on a sporadic flurry of doing chores until I fall over dead because I want to feel useful, despite knowing that my body just can’t keep up sometimes. It’s a vicious cycle that while I have even preached on my blog about moderation and doing what you can, I’m terrible and almost incapable of following myself. 
  • Not All Doctors Understand (but I am grateful for the ones who do): We’ve all been there with doctors ignoring our pleas for help and giving us a litany of excuses as to why we feel the way we do, which can range from “it’s all in our head” to “you need to exercise more.” It can leave us feeling like we are crazy. We know our body and no one should make us doubt our gut. It makes me so angry that I wasted so much time with so many doctors because I chose to believe them blindly. After all, they wore the white coat and had all that schooling. Surely, they have to know, right? Having been writing now for a few years and learning how little “schooling” doctors receive on autoimmune illness, rare illnesses and chronic pain issues, it makes a lot of sense as to why they don’t always pick up on the signs. However, you have to do your due diligence and fight for yourself until you find a doctor who is willing to listen and take the time to figure out what is going on with you. That may mean a rheumatologist, it may mean a neurologist, it may mean a gastroenterologist for you. When you find that doctor, don’t let them go and be grateful that they chose to listen. 
Doctors
  • I Feel Like a Failure: Sometimes, I do. I knew this isn’t an exclusive feeling to those with chronic illness/pain, but the reason I feel like a failure is directly related to those things. I feel like a failure because I haven’t finished school. I feel like a failure because I can’t do many of the things that those in my age group are doing or have done because of my chronic illness. I watch their feeds on Facebook or Imagine Chat and I see these amazing vacations or doing marathons, going hiking, excelling at their job, and it hurts a little. I try to look at those things I have been able to accomplish and feel proud of myself. I remind myself that we are all on a different journey. But it’s still difficult. 
  • I Almost Always Feel Judged Because I Take Opioids: Ugh. This is huge for me. I’ve written about it before here: https://lovekarmafood.com/2019/06/25/i-am-an-un-apologetic-opioid-patient/ However, it’s difficult being a chronic patient who takes opioids in this age of “opioid addiction and hysteria.” I don’t like to feel judged and look on with disdain because I take opioids, and I don’t like to feel like I am contributing to an epidemic that was never my fault. Everyone is different and, unfortunately, there are people whose body chemistry make them more vulnerable to addiction. I am grateful that I am not predisposed to that vulnerability and in the 4 years that I have been using opioids to help me manage my pain I’ve never had a problem. I know I am lucky. What I don’t think, is that I should be judged as though addiction is lurking behind some future door; without opioids, I would not be here.
Opioids
  • I Am Almost Always in Pain: This is not an over-exaggeration of my situation or the situation of many of us with chronic illness/pain. Pain is ever-present. Even with the medication, I am given I am still in pain. There is a reason they call it “pain management.” Every day finds me with some amount of pain and with the meds, I am given it is managed, somewhat. There are days where there is a perfect storm of symptoms and my pain crosses that threshold of managed to unmanageable, but gratefully, those days are fewer because of the pain meds I am given. There is an idea that because I am in pain every day that I should be used to it, but that is wholly untrue. People don’t get used to being poor or hungry or abused. Each day remains a struggle. 
Ouchie Pain

I’m Not Used to It

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There are some out there in the land of healthy who believe that because we’ve been in chronic pain and chronically ill (or perhaps one or the other), for X- amount of time, that we should be used to the constant torment. I’m here to tell you that this is a false-hood. We don’t become used to our situation simply because we have been in the same situation for years- we adapt. Adapting here means that we do things to make our lives easier; we adjust how we sleep in order to attempt a restful night, we shorten our work-days in order to ease the stress of long days on bodies that are already stressed from illness or pain; we change our diets to attempt to quiet the wrath of symptoms for digestive disorders; we take supplements in attempt to strengthen our weakened immune systems; we do so many things in a futile attempt to lessen the wrath of pain and illness, but we never, ever get used to it.

I envy this kind of sleep.

In some ways I can understand the logic behind that particular thinking. When we do things over and over again, for example exercise, we become accustom to how it feels. Eventually, we aren’t as sore as we were the first time, we hit the gym or when we attempted yoga for the first time. Our muscles become accustomed to the rigors of lifting weights or doing planks or squats. But chronic illness and chronic pain are just not the same. It doesn’t matter how many times I get a migraine, it’s always like the first time. It doesn’t matter how often my Crohn’s flares up; it always feels like an assault on my intestines. I am in chronic pain all the time from the fibro and back issues I have, not to mention the pain from the rheumatoid arthritis and while some days might be a little easier, it’s never something I get used to. It’s frustrating and painful and it simply takes so much out of you to just try and function every day. I am always finding myself lamenting the body I used to have (and no, I don’t mean figure-wise), and wishing that I could do the things and be the person I was.

Yoga is great, but does come with consequences, no matter how much I do.

I want people who don’t suffer from chronic illness and chronic pain to know that we never become used to this state of being. That every day is a challenge to simply function on a semi-normal basis. That you don’t have pain and symptoms from your chronic illness for 15 years and just become used to it over time. Our bodies are not static and every day presents new challenges and sometimes, new symptoms and frustrations. Pain medicine is something that doesn’t always work or only takes the edge off the pain leaving you at a seven rather than at a nine. It’s having side effects from the medication that is supposed to be helping you, or having to determine if it’s worth trying certain medications because of the side effects associated with that drug. It’s missing out on going out with friends (if we have any at all, because most people become tired with waiting around for us to feel better), it’s missing on going to events because we suddenly flare up, it’s the anxiety that we have because of our illness and pain (which exacerbates anxiety that we may have already), and it’s the surgeries that we may have in order to try and help our situation that sometimes ends up making us worse. No, we do not ever get used to it.

Oh the reality…

In finality, I offer this: if you are a family member or friend to someone suffering from chronic illness or chronic pain, try to understand them better; try to understand what it is they are going through better; be a better friend or sister, brother, mom or dad. Our lives are complicated and messy and we didn’t ask for this.

Sadly, so very true!

Thank you for reading, sharing and following my blog. It really means the world to me.

Being Your Own Health Advocate

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It’s Not as Easy-Peasy as it Seems

As long as I’ve been sick, and as long as I’ve been blogging, I’ve either been reading about or hearing about being your own health advocate. While being a self-advocate is something that seems easy, and is something that we have been doing since we begin seeing the doctor on our own, it’s not always easy. I’ve wondered why that is and how we can improve on that, to become better self-advocates, because there may come a time when ourselves is all we got.

 

Difficulty Being Assertive with Your Doctor?

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You’re not alone. Many people find that being assertive with their doctor can be a difficult undertaking. We can find ourselves at our most vulnerable when we are with our doctor, both physically and emotionally, but hoping that with all their education and experience, that they have the answer we are so desperate to have. However, when their diagnosis or treatment plan goes against what we may have in mind, we have a great deal of difficulty telling out doctor this. Why?

 

Many of us feel that if we question a doctor, we are somehow questioning their expertise and authority. We don’t see ourselves as equals when sitting with our doctor, even though we are both adults and equal as human beings. This seems to make us feel, in a sense, like a child and a “questioning of expertise may lead to retribution in the form of a lower quality treatment from their doctor somewhere down the road.” We’ve all heard doctors as possessing God complexes. There’s a reason for that and challenging their authority is one of them. But there are ways you can have a relationship with your doctor as an effective communicator- self-advocate. [1] Wagner, 2019

 

 

Non-Negotiable with Doctor

susie signs a contrat

 

Trust: Once you have a doctor, establish trust. Without this, you can’t proceed. Good doctors listen, don’t make you feel rushed and have patience. But doctors can have a bad day and staff can be off, so remember to have patience too.

 

Respect: Everyone starts with respect in my book. You don’t have to earn anything with me. But once you lose it, it’s gone. If a doctor disregards a legitimate complaint; if they tell you it’s nothing and to just lose weight-game over. Find a second opinion and start again.

 

Serious surgery/treatment: Any experimental/trials, surgeries, cancer treatments or whatever, get a 2nd or 3rd opinion if necessary. Do your research and see what trials they did for it; see what other patients said about it, and how they are feeling now. It’s very important to do your homework. If you don’t like what is said, find another doctor.

 

 

Tips for a Good Self-Advocate:

advocate

Communicate: It’s not just about talking. It’s about being effective. Any advocate out there will stress the importance of clarity with your doctor, and communicating your concerns and desires over the progress of your treatment while maintaining a professional relationship is essential. It’s important to be able to discuss treatment with a doctor without feeling like you’re going to hurt an ego.

 

Assertive: “Being pushy without being annoying.” You won’t find that definition on the dictionary, but I like it. In order to be an advocate for yourself, you need to learn how to do this for yourself, because there are going to be many instances you find yourself needing to use it. Whether it’s calling up the insurance company and finding out why a bill hasn’t been paid yet- and as my grandma once told me, you catch more flies with honey than vinegar, it pays to be persistent but not a bitch on the phone. They’re only doing their job and they don’t know any more than you know them.

 

Passionate: Oh, energy and enthusiasm! Chronic illness and chronic pain is a long struggle. You have to bring your pom-poms with you for you, to fight this. Ain’t no one gonna fight harder than you. Remember this when you feel like crap when you’re tired and you hurt and remember when you just don’t want to do it. You gotta look out for number one.

 

Knowledgeable: Research the Issue. It’s easy to Google something but it’s better to research. Google doesn’t mean it’s true, but if you research it and you find five or ten articles that say it’s true, you have a far better chance of the information being true. I’m a big proponent of research and being armed with research when going to the doctor can only strengthen your case when you bring your ideas for certain treatment before them. You may not have a degree but you have the right to consider what treatments you want to try.

 

 

 

[1] Wagner, 2019