Hello friends! You can now find me at www.thepincushionprincess.blogspot.ca
If you're reading this, maybe the title struck a chord with you. Maybe you're stuck in this gray area of "undiagnosis". And you're probably completely fed up- and you're right to be. Now before I dive in, I'll tell you that you may not share the same view on this as me, and that's okay. All I can do is hope this reaches someone at a time when they need it.
My personal story is long and I won't go into too much detail, but after 3 and a half long years of searching for answers for my debilitating illness, the search is looking like it may be coming to an end. I recently found out I have a medication-induced movement disorder and endometriosis, and the relief that comes with answers is inexplicable. You feel validated. You feel like doctors understand your pain. You can look back on all those times you thought maybe it was just in your head and know that it's real. And the feeling of having no answers is the complete opposite. You feel unheard. You feel like no one believes you, and worst of all, you feel like you don't believe yourself. While I was undiagnosed I read many stories of people all around the world who went undiagnosed for years who finally got their answers. I never thought I would be one of them. I definitely felt like I was doomed and that I was going to be sentenced to a life with a body that had gone haywire for no reason. And then, out of nowhere, after one of the worst weeks of my life, answers came by complete fluke. An unfortunate series of events led to what felt like a miracle.
I'll share a few things that my friends told me that helped me through diagnosis "limbo":
1- Trust the universe. The universe has a funny way of working things out when you least expect it. I have a great friend who always reminded me of this throughout all of the turmoil that came with being undiagnosed. When you least expect it, maybe someone will walk into your life who will connect you to someone else who will be the answer to everything. Or maybe one of your millions of tests will finally be the one to reveal something. Gabrielle Bernstein, a motivational speaker, once said, "The universe is always working on our behalf, but not always on our time." And that leads me to my next point.
2- Good things come to those who wait. Being patient is probably one of the hardest parts of being undiagnosed. Prior to getting answers, I saw a quote by Aristotle that read “Patience is bitter, but its fruit is sweet”. I don't know about you, but for me a good quote can really put things in perspective. Now this whole "patience" thing is way easier said than done. I know that. But you should be proud of yourself, because enduring all this waiting while you don't know why your body is failing you is excruciating. Being patient is excruciating. But hang in there, because answers WILL come.
3- Lastly, don't be too hard on yourself. You didn't choose this. No matter what the cause is, this is not something that you wanted for your life. You are not to blame for any of this. An illness is to blame, even if it doesn't yet have a name. Trust your body, and if you feel that something is wrong, be your own advocate without hesitation.
Oh how I wish I had chronicled the last three years of this health journey in detail. I'm thinking this after reading Susannah Cahalan's "Brain on Fire". I can't describe the connection I felt to this book. She said certain things that could have been taken out of my mouth. This girl dealt with an undiagnosed neurological condition for too long, and she made it. Her condition made her deal with psychosis, and while that's not what I'm dealing with (thankfully), there are so many symptoms she dealt with that I relate to. How weak she became, her ataxia, her tests coming back normal, her dozens and dozens of neurological exams, and the fact that they didn't even know if it was neurological or not... all things that are currently part of my life. As a matter of fact, at this point I could probably give you a neurological exam if you needed one. I hope one day I can write a book about my story. This coming week I'll be spending 48 hours hooked up to an EEG machine for a sleep study with a great neurologist. I'm hoping he can get at least some sort of clue from this. The next week we'll be traveling to Hamilton, Ontario to see a neuromuscular specialist who was able to diagnose my friend Derek after him going 10 years undiagnosed. Derek has been the most amazing help and friend to me. Hearing about this doctor gives me hope. When I read his reviews and even hear about him from Derek he reminds me of Dr. Najjar in "Brain on Fire". He was Susannah's Dr. House and I hope maybe this doctor will be my House.
I had a urodynamics study this month and the results concluded that I have a neurogenic bladder. Vesical sphincter dyssynergia, they call it. Next week I will be learning to self-catheterize which I think will be great because I won't have to run to the emergency room anymore when I'm in retention.
Here comes the whiny part:
Some good things are also happening lately! I was asked to write my story for Beyond Type 1 which is a global community for Type 1s. In their words... "Our goal is to highlight the brilliance of those fighting this disease every day while always working toward ensuring a cure is on its way". Nick Jonas is a co-founder of this amazing project and my mom and I absolutely love it, so this was pretty exciting for us!
And that's life lately. Thanks for reading if you did! Maybe things will finally look up from here.
This week I spent a couple of days in the emergency room. I went into urinary retention, likely because the muscles or nerves in my bladder are affected. I was catheterized for the first time and pretty uncomfortable and in pain, and to be honest, scared. My dad decided to go up a few levels and let my geneticist know I was there and what was going on. She had only met him one time months and months ago, but as soon as she saw him she said "You're Michelle's dad, right?". She went on to tell him that she had a crazy day ahead of her but that she'd try to stop by. Because she's a busy, in-demand doctor with tons of patients, I knew she'd try her best but probably wouldn't be able to make it.
Many people were coming in and out of my room throughout the day. Orderlies restocking the cupboards, nurses checking my vitals, and volunteers bringing meal trays. I was shocked when one of the knocks on the door was my geneticist. She sat on my bed in a motherly way and asked me if I was okay and stayed for over half an hour talking to us. I had been wondering about my gene tests and why the results hadn't came in, and without even asking, she told me that she was wondering the same thing and had been calling the lab a few times to nag them! I was in disbelief. This doctor who has so many sick patients actually cared enough about my situation to keep a close eye out for my results. This was so new to me. Over the past two years I've had so many doctors, all of them overrun with patients and so stressed out and busy that they wouldn't even remember who I was, let alone which tests they ordered at the last visit. And here was my doctor, just as busy as all the others, taking her time to come see me, remembering my father after one brief meeting, and nagging a lab about my test. Usually it's the patient who has to nag about their results! She is looking out for me in the same way I was looking out for myself, the same way my mother would look out for me, and that's all I can ask.
To anyone reading this who is thinking "Man, I wish I had a doctor like that.", my advice is; don't settle. You deserve a doctor like this. I wished for so long to find a doctor who would advocate for me and when I least expected it, she came. Don't lose hope. They're not easy to find, but they're out there. Don't stay settle for a doctor who makes you feel like a number. You deserve a Dr. B.
Lately there have been a lot of articles shared debating the detriments that social media is causing to society. To a certain extent, I see what they're saying; It's important to put down your phone or laptop and take in what's in front of you. But let me tell you how social media has changed my life for the better.
When I got sick, especially when I was completely undiagnosed, I felt confused, lost and alone. Unsure what was happening to me and lonely because I was mostly house bound, I didn't know where to turn to. At the time I was very into Tumblr, so I began to search through the 'chronic illness' tag to try to find some people I could relate to. There not only did I make a few friends, I learned about a huge community of people with chronic illnesses who go by 'spoonies'. This is based off The Spoon Theory by Christine Miserando (link: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) which helps describe what daily life is like living with a chronic illness to friends and family. As I got more into Instagram, I slowly became part of that chronic illness community. There I met people of all ages, from all around the world, with all different illnesses. At 20 years old in Canada I became friends with spoonies everywhere; among them a 13 year old with Ehlers-Danlos syndrome from Pennsylvania, a 55 year old with Mixed Connective Tissue Disease from New York, a 16 year old with Cystic Fibrosis all the way from England, and many more. Would I ever have known these wonderful people had it not been for social media? Doubtful! Not only did I gain friendship, I also gained valuable information that led to finally getting the treatment I needed. Friends with similar illnesses who lived in my country were able to point me toward doctors who changed their lives who could hopefully change mine. We were able to share stories and share resources. We also had an idea of what the other was going through and were able to rant to each other on hard days.
So to the nay-sayers,
Yes, if there's a beautiful sunset in front of us we should put our phone down and take it in. If we're spending time with a loved one, we should put our focus on them and enjoy the company. But the internet has not changed the world for the worse. Social media isn't a burden on society. Social media has allowed people like me to get the help they need. Social media has brought people in similar situations together from opposite sides of the world. Social media is a gift. I would be undiagnosed and know many less special people in my life had it not been for social media. Thanks to social media, we are not alone.
Using a walker was never something I imagined myself doing at age 22. But living with Mitochondrial myopathy and ataxia, the need for it became a reality. My dad named my walker "Johnnie Walker" and thought it was genius. I tried to embrace the mobility aid, but the truth is, it's a huge adjustment. People of all ages stare because it's obviously highly unusual to see a young person using a walker. They most likely have no malicious intentions and are just genuinely curious, which you can't blame them for, but that doesn't make it any less uncomfortable. This was my second time using my walker, and to say I was feeling awkward is an understatement. I clumsily tried to get by people who were accidentally not giving me enough space to get by. Don't get me wrong, people are generally very kind to me when I'm using my walker. But people can also be very judgmental and uncaring. It's not their problem that I'm struggling to get by and they'd rather just pretend that I'm invisible to them.
So on this day at the pet store that I felt out of place, when a little boy no more than seven years old went out of his way to hold the door open for me, I was taken aback in the best way possible. Knowing that this pure hearted kid who hasn't even experienced much life yet could be so much more considerate and kind than people five times his age brought me a tear to my eye. So though you'll likely never see this, thank you, kind boy, for reminding me to have a little faith in humanity that day. People can be cold, but people can also surprise you in the best ways. Your small gesture touched me more than you'll ever know.
The way doctors are trained, when they hear hoofbeats, they're supposed to think of horses and not zebras. Well sometimes, like me, you're a zebra.
Some patients have quite a simple path to the diagnosis of a chronic illness. For example, let's talk about my Type 1 diabetes. I was 12 when my A1C (which provides an average of your blood sugars over the last 3 months) was abnormally high. It was a given right then and there, my pancreas was stopping to produce insulin, and I was diagnosed as a diabetic. All it took was one vial of blood to solve the mystery.
Fast forward to now.
At the young age of 22, I sit here dealing with a very different situation. Three years ago I fell ill with a slowly progressive mystery condition. First it caused me minor nuisances, then it took me out of college, and then it left me mostly housebound depending on a walker. Life undiagnosed is not fun. There are friends who slowly disappear because either they don't know how to handle their friend not being able to do the things they used to do, or because they simply don't take an undiagnosed illness seriously. There are doctors who brush you off, because you've already seen so many specialists that you just must be imagining things. In my situation, certain doctors blamed my new symptoms on my pre-existing conditions. When the tests they run don't come back with clear answers, many medical professionals give up far too easily. I've had a doctor listen to me for all of a minute, then tell me to stop looking for answers and to just live my life. Although I left in tears, I didn't listen to him. I knew something was wrong as scarier and scarier things began happening to me with no explanation. With the help of others who had gone years undiagnosed, I pushed on and found a geneticist who believed she knew what was going on, and that is Mitochondrial Disease.
To the doctors that dismissed me,
There will be others like me. They will come to you desperate for answers as to why their body is failing them. They will want to know why they can no longer do the things they used to do and will be hopeful that there is something you can do to bring them back to the life they used to know. You may not know what is plaguing their body, but have an open heart and mind. Imagine it was your son, or daughter, or sister, or brother. If you don't think you can help, maybe you know someone else who might be able to. That small extra action may just change their life in the end. Don't give up on them because they're depending on you.
To the doctors that helped me,
Thank you. Thank you for listening carefully and thinking outside of the box. Thank you for not judging me based on my history of depression. Thank you for joining my team in the fight for answers. Thank you for going above and beyond in your attempt to figure out what was going on with me. I've left many appointments in tears, but I left my appointments with you with a smile and feelings of hope. I wish everyone could see doctors like you.
To the friends who left,
Chronic illness is not a choice. We don't want to cancel plans last minute, or put a damper on things. We want to have just as much fun as you do, but sometimes our bodies just don't allow us. And let me tell you, that doesn't mean we don't know how to have fun. It just means you might have to adapt a little to make things more accessible for us. We feel plenty of guilt for making you adjust your plans, and we hate to feel like things revolve around us. Sometimes we just don't have much of a choice, but that doesn't change who we are.
To the friends who stayed,
Thank you for showing me unconditional love. Thank you for sticking by me through thick and through thin. Chronic illness gets very lonely, and it's that much less lonely because of you. Your small gestures make a world of difference. You are the unsung heroes of this story.
To the undiagnosed,
Don't give up on yourself. You might stay up at night wondering if maybe you're just imagining things. You may begin to wonder if maybe you're just too sensitive. You're not. You have an illness and the medical field is sometimes far less advanced than we think it is. Don't blame yourself. You didn't choose this, and it's not your fault your body is failing you. Nobody knows your body like you do. Just because your illness doesn't have a name yet doesn't mean that it's not there. There will be answers. The time you wait to hear those answers might be some of the most painful days, but keep believing that the day will come that, because it will. Reach out to people who also had trouble getting a diagnosis for their illness. Someone's suggestion may just put you on the right path. Miracles happen at the most random times.
My name is Michelle and I'm a 23 year old girl from Montreal, Quebec with Type 1 diabetes, thyroid disease, endometriosis, and a drug-induced movement disorder that affects coordination, walking, chewing, and holding things among other things.