‘Uncommon’ illness and misdiagnosis: Dysautonomia Awareness Month

I am sick of medical professionals not understanding my condition, actually scratch that… I am sick of medical professionals not even knowing what my condition is. I am sick of having to explain it, and then justify it.

So I will continue to raise awareness until there is education, until there is a cure, and until I can feel truly supported by the healthcare system. 

I am pretty tired of healthcare gas lighting but after my diagnosis I honestly thought those days of having to prove or defend myself were behind me. But no, unfortunately, they are far from over.

It was only the other month that I had to defend myself to a doctor who told me I don’t even have POTs – a condition I have been diagnosed with and am treated for by specialists. I have also been told that I am “just lazy” and that I “don’t try hard enough.”  The issue here is that even on the rare occasions medical professionals have heard of POTs, they usually don’t understand it. They confuse it with low blood pressure and, yes, that is a part of it but it is so much more than that… 

I first remember experiencing POTs symptoms at the age of 4 and it wasn’t until I was 18 that I received a diagnosis. After years of telling doctors my symptoms I was constantly dismissed and told – “I can’t find anything wrong with you, maybe it is just all in your head” and that maybe I am “just stressed.” 

And I am not the only one, several studies have found that 75% of POTs patients were told their symptoms were psychologic and these “numbers were echoed by a study of 779 patients in the UK: 48% were told they had a psychiatric disorder or were hypochondriacs” (Read more about the study here).

My whole life has been impacted by doctors not being aware of my condition, and not listening to how much I was suffering. It was only after I had become bed bound and my mother asked our GP to send me to every possible specialist to make sure nothing else was the cause of my immense fatigue – and even then my doctor said “not to hold out hope” and “that they probably won’t find anything.” This really hurt. I felt like they didn’t believe how hard my life was and I was constantly given the impression that I was ‘weak’.  

The thing about fatigue is that it is also something constantly misunderstood. People think being fatigued is being tired and worn out after a big day. But the fatigue I experienced, and still struggle with, is the lack of energy to eat, to sit up and to walk. POTs patients quality of life can be so greatly diminished and is similar to patients with congestive heart failure, or chronic obstructive pulmonary disease (Read more here). Another study found that over 80% of these patients had to cut back or cease doing things they enjoyed (Read more here). 

Another HUGE issue I have with the lack of awareness of Dysautonomia is the fact that if I did not have my parents to fund my doctors appointments and medical treatments … I don’t know where I would be right now. 

I have to pay a lot of money for my POTs medications. I currently take 3 different medications multiple times a day and the expense is too much. I have no government support for my main medication and there’s only one pharmacy near me that stocks it. 

And if you ask me, the constant unawareness, the fact I have to explain my condition to almost every doctor, the issues around gaslighting still being prevalent and that my medication is not common enough to be subsidised is not good enough.  

So I will continue to raise awareness until there is education, until there is a cure, and until I can feel truly supported by the healthcare system. 

17 thoughts on “‘Uncommon’ illness and misdiagnosis: Dysautonomia Awareness Month”

  1. Susie, I feel so awful for everything you’ve had to go through. To be called lazy and have to fight to be believed is something nobody should have to go through. You are incredibly inspirational raising awareness and I really hope things start to get easier for you.

    Musings & More

    1. Thank you Emily, I really appreciate your kind words and understanding. I hope you had a nice weekend! Thank you for your well wishes! I am sending love to you!

  2. You’re such a brave girl for sharing your story! Truth is, we are all going through something behind the computer screens and it is never right to judge others without knowing all of the ins and outs. I am sure many will find this post inspiring. Stay strong xx

    Naya
    http://www.nayatilly.com

  3. Yes I can fully understand what you are going through as I too have suffered the same with chronic illness. And I was ignored for almost two decades until I was finally told the truth: that I had abdominal adhesions which are caused by an allergic reaction to the gas that is used to separate abdominal organs during surgery. The body grows excess and a different from of scar tissue (as a way to protect the body from a foreign invader) which hardens over time and can cause obstructions. I had to have emergency surgery when I was 12 for an infected appendix. It did not go well and lead to a secondary infection which almost killed me. It also lead to large amounts of adhesions to develop through out my abdominal cavity.

    Twenty years later I had to have surgery for an obstruction in my bladder. It also causes a secondary condition called SIBO which is often misdiagnosed as IBS. SIBO is caused by a lack of motility of the intestines. Most people are unaware, but the intestines engage in a mild contracting usually at night as a flushing device to keep the intestines free of bacteria overgrowth. When the intestines can not carry out these contractions it leads to an unbalance and things like ammonia are present which can be tested as it is on the breath. This in turn causes food to be broken down incorrectly which causes the uncomfortable symptoms. Three main groups of people develop this: people with diabetes b/c of nerve damage, people with schelerdoma and people with adhesions.

    In my case the adhesions had embedded in to the wall of my bladder, grew on to my intestines and liver and then adhered all these organs to my abdominal wall. Suffice is to say there is a reason I am single with no children. This makes carrying a child to term not possible and the act of creating a child painful and difficult. Not too many men signing up for that. I was also diagnosed with atypical AVNRT a form of tachycardia similar to POTS of which there may be a link as POTS can be caused by severe illness/infection and prolonged bed rest which of course is what I experienced at 12 and lost almost a year of my life. I was first diagnosed with an irregular heartbeat at 14 and with the AVNRT a few years ago for which I had an eblation procedure. And yes these forms of heart conditions can cause extreme fatigue. The eblation helped as I do not have as many episodes and when I do have them they are not as strong and do not last as long, but it is not %100 I still have episodes which seem to be related to hormones which my cardiologist confirmed.

    Sadly I still have to deal with the adhesions and the SIBO. Not fun. All one can do is take it day by day and try to be positive but it is not by an stretch of the imagination easy. I wish you the best and hope your symptoms improve.

    Allie of
    http://www.allienyc.com

  4. Your story so impressed me! You are a great fellow that told her and continue to fight.
    Without the confirmation of the doctor, I will not say anything, but it seems to me that I have the same problems (perhaps to a lesser extent). It’s hard to accept …

    I invite you to visit my site: https://demilla.com.ua/

  5. it’s a shame you have so little support with your condition – i hope that as you raise more awareness you aren’t dismissed as often, how painful!

    Hope you’re having a great week 🙂 So hot here, felt like summer today even though it’s only spring!

  6. It’s crazy how you’ve been called lazy considering everything you’ve been through and how far you’ve come, it just seems like the most demotivating thing to say to someone. It’s genuinely so inspiring to read the honesty in your posts and beyond amazing that you continue to raise awareness. Your words are truly making a difference. <3

    //teandtwosugars.blogspot.com xx

  7. I am sorry that medical professionals have not been helpful. The fact that the doctor kept pushing you is not cool. It is important that the message is spread. Thank you for sharing some facts about Dysautonomia.

    Nancy ♥ exquisitely.me

  8. I am so sorry to hear that you’re going through so many difficulties because of the lack of information about your illness. It must be terrible to have to justify yourself all the time when all you want is for them to help. I’ve learned a lot with this post Susie, and I really hope that little by little things will change in the medical field regarding patients like you. Keep your chin up! 🙂

    Julia x
    http://www.juliaspeaksbeauty.blogspot.co.uk

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