If you'd like to see the introduction to this series, please click here to see part 1
When dealing with chronic illness, there’s one thing that you can always have as a weapon. Knowledge. As patients, we are at the mercy of the doctors we are lucky (or unlucky) enough to see. We rely on the information they give us and the guidelines they tell us to follow. In a perfect world; we would only ever be exposed to wonderfully knowledgeable physicians who were all in agreement over a standardized and effective management plan for every chronic illness and complex-needs patient that exists.
We are not in a perfect world. Far from it. As patients with chronic illness we see great number of doctors each year. Speaking from personal experience: nearly every time I see a different doctor, I walk out feeling confused, often upset and like I’ve made no progress compared with before I walked in. If I ever do find a doctor that fits the description of the ‘perfect world’ doctor above – I take it as a freaking miracle. This has become such normality for me that a slightly hilarious scene occurred while playing a board game with friends.
The object of the activity was for two people on a team to hear a phrase said by another player, and privately write down the first 3 things that popped into their heads. We were supposed to get more points the more things we wrote down that matched. I kind of test of how ‘in tune’ two people were. I was doing the activity with my sister, who has had chronic health issues herself. So I thought it was safe to be honest. The phrase we heard was “doctor visit”. I wrote “anxiety”, “disappointed”, “confused”. Those were honestly the first 3 things. She wrote “sick”, “hospital”, “waiting room”. 3 pretty normal things. We received no points and she was very annoyed at me. My sister is competitive.
My point here is – as someone with chronic illness – one can develop quite a complex about doctors visits and hospital stays. This can lead to full-on medical PTSD. It is a very justified reaction to our experiences. Doctors often do not treat us and our conditions with the seriousness and respect we deserve. This not only results in confusion and anxiety, but it can lead to serious lapses in the quality of our care. I have heard stories from many many people in the chronic illness community of being given the wrong advice, leading to receiving damaging treatment or being refused treatment they needed.
Cassie from Cassie Creley blogs said; “I had a new Pulmonologist say I didn’t have asthma…and dismiss my worsening breathing symptoms as “all in my head.” If this doctor had taken my symptoms seriously, I could’ve been referred to a neurologist and diagnosed with Dysautonomia five years earlier. I had no idea that nervous system disorders can also cause breathing problems”.
Rachel Tait of Whatapain blogs said; “My GP told me my pain was in my head… I was dismissed after an x-ray on one wrist showed nothing was broken (of course). He refused to listen to my family history of rheumatoid arthritis and said ‘sometimes knowing nothing is wrong helps’…I knew it wasn't in my head but if a GP wouldn't listen who would? In the end I landed in A&E in unbearable pain….The hospital doctor referred me to a Rheumatologist and a few months later I was diagnosed with Rheumatoid Arthritis.”
Nick Winder of Illness to Ultra Blogs said; “I had a GP jump to anti-depressants far too quickly. He had referred me to an endocrinologist and after results came back from there with no conclusive answer he jumped straight on to anti-depressants… I probably was depressed due to what was happening to me, but this was not the root cause of the issue. I now know much more, and the path that this suggestion could have led me down would have been a huge mistake.”
Personally, I could choose from countless anecdotes to vouch for this problem of being mislead by doctors who are being lazy, or who are ignorant of when to see ‘the zebra’ in the room. Possibly the one that caused me the most damage was when I started going to my GP for some extra persistent headaches and fatigue after a (now very telling) bout of Epstein-Barr virus. Also known as Mono, or Glandular Fever.
My GP, a temporary stand-in who didn’t know me, simply prescribed pain killer after quite strong pain killer in the hopes that I would stop coming back. Not only did they not work, they seemed to be making things worse. I was then told that I was taking too many pain killers, and what I needed to do was ignore the pain. I believed the doctors because at the time I didn’t know better. I thought there must be nothing wrong with me, and I was just being a hypochondriac. I was unfit and I needed to run more (bad idea!) And low and behold… ignoring it didn’t work. Running certainly did not work. I had postural tachycardia syndrome for God’s sake! No wonder I was getting blurred vision and migraines and losing the ability to walk straight every time I tried exercising. I firmly believe that this chapter of my life obstructed my standard of care and caused my health to worsen because of doctors being lazy, and me not knowing better.
The thing is – once you know you have a problem that’s not going away – your own knowledge really can make all the difference. There is a point at which your knowledge and persistence will force them to listen. You have the ability to research and learn. I found my first diagnosis – POTS. I brought it up with my doctors, I was tested and then diagnosed. That started the process of investigation that has lead me to where I am now – knowing I am a Zebra.
Knowledge is power. It truly is. Research carefully, WebMd is not always the best. But scholarly articles and information posted by credited medical institutions and rare/chronic disease foundations CAN be trusted. Even blog posts by other chronic illness patients who have researched their own information are MOSTLY good sources of information. You will notice that this blog post is full of links. I've tried to link the technical terms I've used to useful information sources. Try starting with them!
You will likely find, as I did, that many chronic illnesses are similar in symptoms but not the same as what you are experiencing. And then there will be an a-ha moment. That’s how I found POTS. I read the symptoms, causes and clinical presentation and it just matched. It was my life in a nutshell.
Now by no means am I advocating for self-diagnosis. If you have this a-ha moment, bring it up with a doctor you trust. Fight and practice self-advocacy to get tested or evaluated. Then if you are diagnosed, keep reading. Know everything there is to know. So that as you embark down your treatment journey, you’ll be nobody’s fool.
Shout-out to the contributors for this blog!
Nick Winder - https://illnesstoultra.com/
Cassie Creley - http://cassiecreley.com/category/blog/
Rachel Tait - www.whatapain.co.uk
Check out their sites, they've got amazing content.
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