I have a lot of friends and family in the medical field, so I see this a lot. I understand where it comes from; there is a lot of false information out there that will mislead people into believing things that are categorically false (cough-anti-vaxxers-cough), and that can be frustrating for the people who spent a lot of time, money, and migraines learning the facts.

But, unfortunately, this kind of meme is also reductive to a resource that genuinely helps a lot of people with illness, chronic or otherwise. Because a google search can truly be a sick person’s best resource.

Because, quite often, our google searches find the answers faster than the people with medical degrees.

This isn’t because those medical degrees aren’t incredibly valuable and knowledgable in a way that patients are not. They are. We love medical degrees. We rely on medical degrees.

But those medical degrees have very full days, a wide variety of patients with unique problems, and a lifetime of textbook information swirling around in their head. Most of the time, they don’t really know us. All of the time, they haven’t lived a single day in our bodies. We’ve done quite a bit of that.

I currently have three diagnoses. Exactly zero of those diagnoses were suggested by a person with a medical degree. One (my most recent) was suggested by a friend with the same syndrome. The other two were suggested by me after (you guessed it) a google search.

Diagnosis 1: I was sick and vomiting all the time. I had no idea why. I had come home from my semester abroad at school because I could barely stand upright. Routine tests for the scary C word and other awful things fortunately came back negative. The more benign, fixable things (like a parasite) unfortunately came back negative, too. I was sent to specialists, run through test after test, and I was still stuck laying in bed with intense abdominal pain, wondering what the hell was happening with my body. Searching around mayoclinic.com, I discovered something called “gastroparesis.”  A bell rang in my head. Almost all the symptoms lined up. This made sense. I could feel it. This was what was wrong. I went into my next appointment insisting on a gastric emptying scan. It came back positive, and I wasn’t even a little surprised.

Diagnosis 2: Finally given nutrients from my feeding tube, I was wondering why I was still fatigued and lightheaded all the time. Multiple intelligent, caring, and thoroughly competent doctors suggested continued malnourishment and dehydration. But it just didn’t seem right. Reading the fabulous Just Mildly Medicated‘s blog, I noticed her symptoms sounded very familiar and similar to mine. I looked more into dysautonomia. I bought a blood pressure cuff from CVS and noticed my abnormal heart rate changes. I asked for a cardiac referral, got a tilt table test, and was diagnosed with dysautonomia. I wasn’t even a little surprised.

Diagnosis 3: Searching for a cause of my other syndromes, which are usually just as much symptoms as they are conditions themselves, I was talking to my good friend who also has Diagnoses 1 and 2, and she asked if I ever considered her underlying diagnosis, Ehlers-Danlos Syndrome. When I thought I didn’t fit the bill, she asked me questions, explained the syndrome, and effectively diagnosed me. I did more (yup) google searching, and the same light in my head went off as those two other times. I made an appointment with a geneticist who clinically diagnosed me with Ehlers Danlos Syndrome – Hypermobility Type III. I wasn’t even a little surprised.

The moral of these stories is not that doctors are incompetent. It’s just that they’re limited because they are experts in medicine, not experts in your body. You have lived in your body every moment of your life, so you know it in a way that nobody else can. So you often get a gut instinct for when something is right or wrong with it.

Now, that being said, I would be nowhere without the doctors who can effectively run the tests and prescribe the medication to help me deal with my illnesses. There’s so often a mentality that the doctor is the mechanic and you are the car. So you should just shut up and let them fix you. But you are not a machine. You are, unfortunately, much more complicated than that.

So the doctor/patient relationship, at its best, is a collaboration. There needs to be trust both ways. Because the truth of the matter is that, because I have the time to research and the personal, lived experiences of it, I know more about dysautonomia than my cardiologist. But he knows more about the cardiac and vascular system than I ever will. And so nothing will ever get accomplished unless the two of us trust each other. And if we don’t trust each other? It’s time for me to move on to a different doctor.

I am lucky, though. My current team of doctors does trust and respect my word, and I theirs. This isn’t the easiest to find, and I didn’t find it right off the bat. So, dear spoonie reader (or spoonie loved one), trust and respect yourself enough to find a doctor who trusts and respects you. You deserve it, and you need it. Use the google search, be skeptical of the source, collaborate with your doctor, and, above all, trust yourself.

About the Author:

Leah is a 25 year old suburb-of-Philly native. She has Ehlers Danlos Syndrome – Hypermobility Type, Gastroparesis, Dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of.

The post Self Diagnosis: Sometimes Your Google Search is Better Than Their Medical Degree appeared first on Spoon Shares.

Working with and finding good doctors will probably be the greatest challenge you face as a spoonie, mainly because the skill of your doctor will impact every part of your life, including your physical health, mental health, relationships, insurance claims, and any accommodations you may receive. A lot of folks are raised believing that doctors are somewhat of a magical breed: you go to them and they fix you, full stop. However, where chronic illnesses are concerned, the lack of research and understanding of the symptoms you’re experiencing will likely reveal how incorrect this belief is.

Doctors, like us, are fallible; they only have so much knowledge, and they can often be swayed by their own personal opinions. Because of this, choosing a good doctor—even if it means “dumping” a bad one—is absolutely vital. You may feel like or be told that you’re being too high-maintenance, but remember that you deserve to have a doctor who helps you and with whom you feel absolutely comfortable.

Signs of a Good Doctor

• Patient; listens well and encourages you to ask questions
• Validates your feelings and experiences; shows that they believe your symptoms are real
• Responsive to phone calls, emails, and requests
• Admits when they’ve reached the limits of their knowledge
• Communicates about what they’re thinking and the next steps they’re considering

Signs of a Bad Doctor

• Rushes you through your appointment
• Shows or says that they don’t believe you’re sick; invalidates your experience
• Tells you it’s all in your head
• Unresponsive to communication outside of appointment; forgets to fill prescriptions or process referrals
• Doesn’t look further than their own knowledge; doesn’t appear to engage in research or referrals
• You can never tell what they’re thinking or planning

This post was excerpted from the informational zine Chronically Badass. 

About the Author:

Diane is a newly-diagnosed spoonie living in Portland, Oregon. She runs a blog Spoonie Living (spoonie-living.tumblr.com), and has also published a free, informational zine for spoonies called Chronically Badass (https://gumroad.com/l/chronically-badass). 

The post Working With Doctors appeared first on Spoon Shares.

Getting a diagnosis is a very important step in your journey of chronic illness. Along with giving you a better understanding of what’s going on inside you, it can help with the process of getting accommodations and processing insurance claims. Although a diagnosis isn’t likely to be the end of your story, it’s certainly something you’ll want to pursue if you’re able.

Unfortunately, due to the vague, inconsistent symptoms many chronic illness patients experience (fatigue, pain, disorientation, and so on), as well as a serious lack of research in the relevant fields, many chronic illnesses are very difficult to diagnose. In fact, according to one 2014 report, “patients report it takes more than three-and-a-half years and nearly five doctors to receive a correct autoimmune disease diagnosis.”* Although not all chronic illnesses are autoimmune-related, the experience appears to be similar across other types of chronic illness as well, with many spoonies struggling to be taken seriously by their doctors, as well as having to fight to find doctors with the appropriate knowledge to run the right tests and point them in the right direction.

What this means is that you will need to take on the brunt of the work, and become an advocate for yourself and your health. Unlike a toothache or a cold, what you have is likely not something your doctor has seen (or read) much of before. So, you’ll find yourself taking the lead, asserting that your symptoms are at a level that merits concern, asking your doctor to run certain tests, requesting referrals to specialists, and so on.

Because many doctors and nurses (especially general practitioners) are likely not well-educated in the illness you’re experiencing, you’ll find yourself searching online—Googling your symptoms, talking to other spoonies, reading blogs, and so on. To a healthy person, this may appear obsessive (“stop trying to diagnose yourself!”), but in moderation it can be a huge help in the process of receiving a diagnosis. Eventually, you’ll become an expert in your own condition, and surprise your doctors with all the information you’ve soaked up!

One thing I can’t stress enough is keeping records of your symptoms, doctor visits, medications, treatments, and insurance claims. A lot of spoonies experience “brain fog” as a part of their symptoms, which it makes it even harder to keep track as they go from doctor to doctor. Be sure to protect yourself from this sort of experience, especially when insurance, disability status, medication regimens, etc. are at stake.

*http://www.aarda.org/news-briefing-for-autoimmune-disease-awareness-month-2014/

This post was excerpted from the informational zine Chronically Badass. 

About the Author:

Diane is a newly-diagnosed spoonie living in Portland, Oregon. She runs a blog Spoonie Living (spoonie-living.tumblr.com), and has also published a free, informational zine for spoonies called Chronically Badass (https://gumroad.com/l/chronically-badass). 

The post Getting Answers appeared first on Spoon Shares.

You’ve been diagnosed with gastroparesis? Hey, me too!

I was diagnosed with gastroparesis about three years ago, and I’m going to give you what I believe to be the top five pieces of advice you can hear at this moment.

I’m not going to give you the basics of the disease because you can find that on mayoclinic.com, which I recommend if you want a basic rundown of almost any disease.

Being diagnosed with gastroparesis can be super scary because you’re given almost no information whatsoever when you’re first diagnosed. You’re basically told, “Well, you should modify your diet to control your symptoms, but you will most likely have this forever. Good day!” 

So you go on the message boards of death and despair and hear all about how awful this disease is and you break down in a ball crying because you think that your life is over. Which brings me to Tip #1: 

Tip 1) Get off the message boards.

They are scary, scary places and not helpful to you at this moment. Your life is not over, but the message boards will often make you think that it is. 

You can always go back to them later, when you have a better handle on your situation.

Tip 2) Get some reliable information.

Unfortunately, that’s hard to find with gastroparesis. The best recommendation I can give is to go to livingwithgastroparesis.com. It’s a website by GP nutritionist Crystal Saltrelli designed to teach people how to live well with gastroparesis. She has this wonderful, calming video on the front page that basically says “Welcome to the place of non histrionic solutions.” When I first saw it, I almost cried in relief. She has amazing resources, including a free Quick Start guide that basically serves as the pamphlet your doctor never gave you. She also has two books which I highly recommend: one on eating for gastroparesis and one on living with gastroparesis — I have them on ebook, which is nice because I can quickly reference them on my smartphone. She also teaches online classes and runs incredibly informative group programs. These can be a bit more expensive but, in my opinion, they are worth every penny. She’ll work with you on a payment plan if necessary.

Sorry this just turned into a giant advertisement for Crystal Saltrelli, but she just runs a really good outfit. She’s like the Yoda of GP.

A lot of the information and philosophies I’ll share on this website come from things I learned from her. So check her out!

Tip 3) Get a great support team.

Having this disorder is difficult. You can’t do this on your own, however much you want to believe and delude yourself that you can.

You need people who can support you physically, medically, and emotionally. They will be your sanity.

I currently live with my amazing parents, and my mom helps me with a lot of daily things I find too physically difficult. Remember that this is hard for your loved ones as well, so show your appreciation whenever possible.

If you don’t have anyone to help you logistically, you can get home health care assistance through most insurances.

Emotional support most often comes in the form of family and friends, so be careful not to lose touch. Put the effort into maintaining those relationships — they have things going on, too.  Sometimes it’s helpful to find a literal support group of people who are in a similar situation. In this amazing interconnected age, you can usually find one online. I found one, almost by accident, and it was one of the best things I ever did (shout out to my gp sisters!).  Many people really find therapy helpful. The brain and the gut are inextricably connected (seriously, read up on that because it’s pretty fascinating), and one can exacerbate the other. So take care of your brain. 

Finding the right doctor is also so, so important. I can’t emphasize that enough. I often tell people that finding the right doctor is like dating, most of the time you have to shop around until you find the right one for you. Don’t settle for a doctor who won’t listen to you, or even believe what you’re saying.

You know your body best and it’s vital at this juncture in your life that you become your own best advocate.

If you’re having financial struggles with these insane bills, finding some form of social advocate will help relieve that enormous burden.

Tip 4) Do some a lot of dietary research.

It has never been more important to watch what you put in your body and understand how your body digests. It astounds me how profoundly our bodies can be affected by what food we put into it. I personally wouldn’t recommend a dietitian because they never seem to agree on one philosophy, they rarely know about gastroparesis, and it’s really hard to find one who isn’t just trying to sell you their powders. I think your time and money is better spent reading on lots of different ideas surrounding nutrition so that you can choose the method that makes the most sense to you.

And finally, but possibly most importantly…

Tip 5) Have patience with yourself.

This is not a battle because it is not something you can win or beat. It is a constant negotiation with your new body.

Gastroparesis is not a progressive condition — however it is important to note that symptoms can get worse if you begin to suffer from malnutrition — but it is also not a constant condition. It ebbs and flows with the tides. You might feel great one day and horrible the next, and it’s very hard to predict what your symptoms will be day to day. This can be horribly frustrating, as it means that things you plan and look forward to often don’t work out. Plan for this accordingly. I advise telling people when you make plans that there is a chance you could cancel depending on your symptoms.

It’s important at these times, when you feel you’ve let yourself down, that you recognize that you are not crazy, you are not a wimp, and it is not all in your head. I know these thoughts because I have had these thoughts. Gastroparesis is a very serious but invisible medical condition that can rear its ugly head at any moment. The most important thing you can do is take care of your body, because if you try and ignore your symptoms you’ll just get worse and worse. I speak from experience.

I’ll close this list with my favorite corny platitude that helps me get through the days where I wasn’t able to do the things I wanted or intended.

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow.'”

About the Author:

Leah is a 24 years old suburb-of-Philly native. She has gastroparesis, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post Top 5 Pieces of Advice for Newly Diagnosed Gastroparesis Patients appeared first on Spoon Shares.