Ep. 50 the one about medical mountains

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“A weird trick to get doctors to listen to you,” by journalist Carolyn Liddell caught Moira’s eye when she was considering how to successfully raise another medical concern. People with ADHD are at higher risk of gaslighting and not receiving adequate medical support.  Moira shares her journey with multiple health conditions & self-advocacy. When we can figure out what might be wrong, how do we bring it up to our doctors without offending them and be heard?  

Welcome to the ADHD Friendly Lifestyle Podcast, for those of us with ADHD, who have had enough of trying harder and want to live a more comfortable, healthy, and happy life with less frustration and overwhelm. It’s time to get rid of guilt and shame–around having ADHD, our needs, and challenges through stories, knowledge, and humor to speak up about the experience of women, moms, and being late diagnosed with ADHD. 
 
We can build acceptance and growing our self-compassion over time, to help us take care of ourselves, ask for help when we need it, and be comfortable with who we are. Join me, Moira Maybin, as I share knowledge about ADHD to make your life easier, and what choices you have to make your tomorrow a more ADHD Friendly day.
 
Thank you for being part of the ADHD Friendly Lifestyle, hosted by Moira Maybin. Subscribe to the show on the podcast player of your choice and leave a rating and review. Join the conversation today!
 
Have a question suggestion or want to reach out? Email Ask@adhdfriendlylifestyle.com

Show Notes:

Topics discussed in today's episode:

00:14 Moira  “A weird trick to get doctors to listen to you.” 

01:22 Moira Learning how to self-advocate is part of the deal 

03:03 Moira Undiagnosed medical conditions, challenges in getting treatment  

07:15 Moira When we can figure out what might be wrong, how do we bring it up without offending our doctors? 

08:57 Moira What do we want most from a medical professional? 

10:49 Moira shares Carolyn Liddell’s view on why getting a doctor to take us seriously goes wrong 

11:52 Moira It’s not what we say, but how we say it.  

13:33 Moira Here are suggestions for every type of doctor  

14:14 Moira What makes this approach work 

15:09 Moira Why continue climbing medical mountains  

Resources:

Transcript:

Moira Maybin  00:00 I acknowledge that I live, work, and play on the shared, unceded territories of the Semiahmoo First Nation. The Semiahmoo People have been stewards of this land since time immemorial.

Moira Maybin  00:14 I was looking for hope and ideas on bringing up another concern with my family doctor of one year, when I found an article by columnist Carolyn Liddell, entitled, “A weird trick to get doctors to listen to you.” I was so intrigued that today’s episode will focus on sharing her advice. I hope you don’t ever need it. But sadly, I suspect if you don’t already, you will.

Moira Maybin  00:43 Welcome to the ADHD Friendly Lifestyle. I’m your host, Moira Maybin, a woman, Mom, and educator, and I have late diagnosed ADHD. The more I know about my ADHD, the easier life is to make different decisions, ones that are more ADHD friendly. We can use this time to practice getting rid of guilt or shame and spending more time with our strengths and passions. I want to share all of this with you. For show notes, including next steps, resources, and articles on this topic, visit adhdfriendlylifestyle.com. 

Moira Maybin  01:22 I’m in the middle of determining a diagnosis for my third significant medical condition or disorder. It all started with an autoimmune disease in my early 30s and ADHD in my mid-40s and I’m coming across the exact same words and experiences again.  Complex, underdiagnosed and misunderstood in the medical and general community. Being told that the best thing for my health and well-being is to find support communities, and ask many questions, so I can understand my condition better, and by learning how to self-advocate. Sound familiar? Unfortunately, this isn’t just an ADHD thing. When we show up at a doctor’s office, it can be hit and miss if we’re adequately taken care of. It’s up to us to be the most informed expert to explain our situation and know how it will impact our treatment considerations.

Moira Maybin  02:29 The problem that gets added to our list is sorting out what is within our power and control to be part of the solution and get the care we need. I certainly don’t want to be part of the problem. This article gives very pointed advice. I used it and the results are interesting. However, I am tired, and I have tried a lot before giving this a go.

Moira Maybin  03:03 My collection of too many medical conditions started in my 20s. And now in my early 50s I have more than I think anyone should be allowed to have. Ironically, most of them I have had since birth, I just didn’t know that my experience was different from that of normal people. If you’ve been listening for a while, you will know that I am full on and intense about the things that interests me or are important. I am nothing if not thorough. Most of my medical conditions have been diagnosed almost by accident. The only thing harder than getting an actual diagnosis has been accessing treatment.

Moira Maybin  03:46 I discovered my autoimmune disease right before it became all-consuming in my life. When I hope to become pregnant, the Moira in me needed to go all in to learn about fertility and reproduction. This drive also comes partially from spending most of my life with untreated ADHD. My desire to do well and succeed meant that knowledge and getting it right, were a high priority. The book, Taking Charge of Your Fertility, taught me more about my own body than I had known up to that point., and it helped me stumble onto discovering a growing problem.

Moira Maybin  04:24 I had begun to track my basal body temperature every morning before getting out of bed. Ovulation can cause a slight increase in basal body temperature and monitoring it over time helps recognize patterns. The most fertile time is two to three days before a temperature rise. So, by tracking my basal body temperature each day, I could predict ovulation Great! Oh, wait, hold on here. My body temperature was lower, and it never even got in the normal range. I checked the handy footnote in the book because you know, the internet was not so much of a thing then. And it said lower temperatures could be a sign of thyroid issues. That one sentence was the beginning of the next chapter in my book, let’s call it, Taking Charge of your Health. From then on, I became a patient who reads medical journals, finds experts, and requests my lab results, and all my medical reports. If I don’t understand something, I ask questions and learn. It’s not a question of wanting to participate in my health because I don’t have any other choice. I need to be.

Moira Maybin  05:44 I took on learning about what could be causing my health problems with a youthful intensity, and I went to see my doctor well-prepared with my new knowledge. I didn’t know then, how common it is for some of us, especially women, to mask our struggles. My Achilles heel has been that I spend so much time and effort trying to keep my shit together, that when I would finally ask for help or say something is wrong. Others seem to underestimate what I’m trying to share. It was hard to convince my doctor that there were symptoms essential to explore what finally did the trick then was taking my mother with me. My doctor shared that they recognize when a patient brings a second person, this is serious to them. Hmm.

Moira Maybin  06:36 Unfortunately, that’s not the end of that story. By the time I was diagnosed with an autoimmune disease, I was sleeping 16 hours a day, and couldn’t work. But the specialist calmly explained to me that I wasn’t ill enough to require treatment, maybe later. At the same time, I was sobbing, and I knew from my own learning that the symptoms I had combined with my lab result indicated that treatment could help. The saving grace was my family doctor willing to refer me to another specialist who based my care on my ability to function. That was how I got my life back. Five years later, when I experienced complications that had me considering long-term disability, we spent an entire year trying different medications until we found something that worked. Once again, I got my life back. I am dreading their day of retirement.

Moira Maybin  07:40 You might have already heard in an early episode, that my family doctor of 20 years had never had an adult patient with ADHD when I came seeking help. My children were already diagnosed, and I had dug in to understand adult ADHD. By then, we knew each other well enough that she could accept that I knew myself well enough to know what to ask. So here we are at the root of the problem that Carolyn Liddell’s article addressed: “When we can figure out what might be wrong, how do we bring it up to our doctors without offending them?” Add in that people with ADHD are at higher risk of gaslighting, and not receiving adequate medical support. I’ve included more information on that topic in the show notes. I hope you’ve heard that I’ve had both good and bad experiences with doctors. I’m only sharing this to equip ourselves to work within a system that has been severely tested and strained over the last few years so that we don’t fall between the cracks.

Moira Maybin  08:57 So I’ve had my current doctor for about a year. My relationship with my GP has been good, but I’m tentative because it’s new and I have tender spots from past experiences with other doctors. What I want most from a medical professional is a working relationship with an open dialogue. As I learn about different personalities, I am willing to tailor my interactions to help myself be heard and understood. In Canada, there are not many options for private pay health care. Our family doctor is the gatekeeper. Without the referral access to specialists can be limited. For these reasons, I am still hesitant and trying to learn what works with my new doctor. I’m sure I will share more as time goes on. But right now, I’m dealing with a lot of not fun health things. I’m in pain a lot. She has put in many referrals as the issues mount. Wait times in Canada have gotten very long. A referral goes in, we wait for a phone call, then we wait for the appointment, then we wait for tests, then we wait for results. And then we wait to have a follow-up. I was at my wit’s end when my physiotherapist asked about something I’ve suffered from my whole life but never have had an official diagnosis. And it turns out it has an impact on so many other things. As I learn more about it, it explains every physical challenge I’ve had that ADHD and my autoimmune disorder doesn’t have an impact on. I know that you can hear my voice that talking to my doctor about this issue was important.

Moira Maybin  10:49 That led me to Carolyn’s article, and the piece opens with the following statement: There’s a lot of advice on getting a doctor to take you seriously. Most of it is wrong. Carolyn spent over a decade seeking medical help, before receiving a diagnosis for Ehlers Danlos Syndrome, a connective tissue disorder that also comes with chronic pain. Carolyn says doctors are notorious for downplaying symptoms, ignoring concerns and blaming everything on the patient’s weight, smoking, stress, drug seeking behavior. They also tend to have a violent aversion to patients who suggests their own diagnoses. Their delicate Doctor egos override any rational reaction. And more often than not, patients with chronic illness leave their appointments with no answers. Initially thinking that being a woman was part of it, she changed her mind after having similar experiences with men at their medical appointments.

Moira Maybin  11:52 Carolyn’s tricks, so doctors will listen, is a variation on it’s not what we say, it’s how we say it and it’s all about making it easier to be heard. We start with what we need to know what we want to share, and ask about, but instead of it coming from us. We’re asking on behalf of someone else.

Moira Maybin  12:15 Here’s an example: Don’t say I think I have ADHD. Instead, say so my partner said I had to ask you about something. I don’t know if they’re right, but they’ll be mad at me if I don’t bring it up with you. They think I might have something called ADHD and that you might be able to help me?

Moira Maybin  12:36

Here’s another one. Don’t say I think I have Ehlers-Danlos Syndrome. Instead, say my best friend wanted me to ask you about something. I don’t even think it’s a thing. But they think I might have something called EDS. Ehlers-Danlos Syndrome, I think, I don’t know. It’s probably rare. But have you heard of it? Do you think I might have it?

Moira Maybin  12:57 Here’s the thing that Carolyn very accurately shared. It is annoying and demeaning to have to do this. But our episode today isn’t about overturning medical power structures. It’s about how to get immediate results in dire or even life-threatening situations. Carolyn credits her approach to helping her get an EDS diagnosis after 10 years of chronic pain and helping others like me, who have used it. Here are her suggestions for how it can work for every type of doctor.

Moira Maybin  13:33 This is what you can say to them.

To ER doctors: My spouse made me come here to check this chest pain.

To family primary care physicians: my roommates that I had to ask about having my thyroid level checked.

To pain specialists: My brother thinks I have rheumatoid arthritis and wanted me to ask you about it

To psychiatrists: my aunt said I should ask you about anxiety medications.

This will not only help them to take your symptoms seriously, but it will also convince them to order specific tests, offer particular medications and consider a specific diagnosis.

Moira Maybin  14:14 Here’s why this works. The focus is shifted to someone else, putting you in the doctor on the same side. Being on the same side means it’s more likely someone will want to help. It can also help lower anyone’s defenses. I use that with my kids telling them if they’re ever in a sticky social situation and one out, throw me under the bus. Make me the strict mom who needs them home right now. It’s the same thing here. Whoever your third party is they can take the heat because it won’t impact them. Another reason this helps is that it provides more external accountability. The doctor knows someone else will follow up with you on what happened, that alone can often have a significant impact on how they treat us.

Moira Maybin  15:09 When I recently tried this out, I used what my physiotherapist shared. I took on a different tone than I might usually use. It was more questioning that I wondered if what they said could be true. I had learned by then a lot about the symptoms and had been blown away by how many I had, but I kept my tone light. I shared many things from my lifetime, that I knew would tick boxes for her but I did it in a brief form. I was also prepared when I was asked if there was even a reason to figure out a diagnosis for an uncurable, not well-known hard to treat disorder because it wouldn’t change treatment. It seems since there are a few doctors who understand this condition. It’s a common question. My answer would be the same as for any of the medical mountains I’ve had to climb. Diagnosis is essential for symptom management, preventative measures and feeling validation this is not in my head. For all the times that I was doubted by myself or others, just something was wrong with me. And it was just me. This is really a thing. There was no hesitation on my doctor’s part to put in the referral. And when I mentioned validation, she said, Oh yes. I got off the call feeling like it was a success. A week later, I learned that the wait for the phone call for the appointment would be at least six months. Yes, I was heard. The first step was taken. But my attempts to take charge of my next health challenge are just beginning.

Moira Maybin  17:12 Okay, you’ve done the hard work by staying to the end, your reward? Here are the main takeaways from today’s episode.

  1. People with ADHD are at a higher risk of gaslighting, and not receiving adequate medical support.
  2. We quickly learned that our health and well being depend on understanding our condition better and being able to self advocate.
  3. The ideal would be open and supportive working relationships with our doctors but unfortunately, it doesn’t often work out that way. And there are too many conditions for there to be enough experts in everything.
  4. When we might know what is wrong, and want to be heard, is there anything to lose by trying this idea?

 

Thank you for joining me today. If you like this episode, tune in again and if you know someone who will be inspired or encouraged by listening to the ADHD Friendly Lifestyle, please share this. You can find the ADHD Friendly Lifestyle on your favorite podcast player. So go ahead and take a moment to subscribe right now to make sure you’ll never miss an episode. Follow the ADHD Friendly Lifestyle on Facebook and Instagram for lighthearted expressions of life with ADHD alongside ideas and resources to support me or the podcast check out Patreon at patreon.com/adhdfriendlylifestyle.com  for exclusive content, early access to episodes and a one-hour live Q&A and Ask Me Anything each month for every Patreon supporter. At the 25 and $50 levels you’ll be invited to monthly group coaching sessions and more.  Looking for other great ADHD podcasts to have on your playlist? ADHD Essential hosted by Brendan Mahan and Hacking your ADHD with Will Curb. Brendan covers many topics related to parenting and family life with ADHD. Will focuses on tools tips and insight that always inspire.  Happy listening. I’ll be back again with you on the next

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Picture of Moira Maybin, M.Ed. (EdPsy.)

Moira Maybin, M.Ed. (EdPsy.)

I help people with ADHD who are tired of trying harder and are ready to give up the struggle. This is the place for the late-diagnosed, women, moms, professionals, those who want to understand ADHD, be heard, and know they are not alone. An ADHD Friendly Lifestyle builds our ability to take care of ourselves and use our unique strengths and talents to create a life that works for us.

Picture of Moira Maybin, M.Ed. (EdPsy.)
Moira Maybin, M.Ed. (EdPsy.)

I help people with ADHD who are tired of trying harder and are ready to give up the struggle. This is the place for the late-diagnosed, women, moms, professionals, those who want to understand ADHD, be heard, and know they are not alone. An ADHD Friendly Lifestyle builds our ability to take care of ourselves and use our unique strengths and talents to create a life that works for us.

I help people with ADHD who are tired of trying harder and are ready to give up the struggle. This is the place for the late-diagnosed, women, moms, professionals, those who want to understand ADHD, be heard, and know they are not alone. An ADHD Friendly Lifestyle builds our ability to take care of ourselves and use our unique strengths and talents to create a life that works for us.

Moira maybin, M.Ed. (EdPsy.)