I’m sitting in a doctor’s office trying to breathe slowly enough to hold back the panic attack that is brewing under the surface. Doctor’s haven’t always made me feel anxious, I mean I used to work with them in the ICU. But over the past four years of having a chronic illness and disability, I’ve come to dread medical appointments.
I don’t dread them because of the news they offer necessarily. New diagnosis or weird test results are normal to me and I’ve learned how to take that in stride because what else can you do when life keeps throwing you so many health curveballs?
What actually causes me anxiety is how quickly I’ve been dismissed by many doctor’s lately.
Like when I went back to the first internal medicine doctor to ask for more information about the diagnosis and he got irritated with my questions, was almost immediately defensive and was out the door within 3 minutes of our 15 minute appointment.
Or when I went to see a neurologist after having a migraine that mimicked a stroke and he said ‘take a magnesium supplement and track your symptoms.” and that was it. I was out the door with no follow up including no follow up for the aneurysm they found.
Or when I was experiencing some pretty significant OCD intrusive thoughts and wanted to get some help to manage these along with the medication I was already taking. I went to a psychiatrist who had me do a 12 question anxiety assessment, said “Yup, you have anxiety” and showed me the door all but physically pushing me out of his office while I was asking for other ideas or books or something I could use to learn how to better manage my OCD.
I felt so resigned to the fact that I was on my own with this and my hyper-independence kicked in as I did what I could to figure it out.
Then about 10 months ago I started to get a whole bunch of new symptoms that were different then what I was used to experiencing with my already existing diagnoses.
I didn’t do anything about it except manage the symptoms because I didn’t think I was going to get any help if I brought this up to a doctor.
But then it got worse and worse and couldn’t be ignored anymore, so I went to my family doctor who is wonderful and has done a lot to support me over the years. He has made many referrals for me in the past to help me get my diagnoses and helps me manage my medications and I’m grateful for that. When I mentioned all of my new symptoms he referred me to another internal medicine specialist.
And that’s where I am right now. Sitting in that doctor’s office trying my best to not have my guard up too much.
Trying to be calm.
Trying to not be too pessimistic that this person might just dismiss me as well.
My name was called and I could feel my heart beating against my ribs as I walked into the exam room.
A few minutes later the doctor walks into the room, introduces herself and sits down at her computer. I hand her my super type-a health history and medications list that I had prepared for her to make sure I didn’t miss anything (because I’m complicated and have a lot going on) and also to try and save my voice because I can lose it if I talk too much in too short a period of time.
She starts going through the list and asks questions like “Who’s your neurologist?” and I say, I don’t have one and explain what happened.
She pursed her lips and then said “that’s not okay” and acknowledged that it’s great my family doctor has been following up with repeat CT scans to monitor the aneurysm but that she’ll see about what to do with the migraines.
She asks about my OCD and who my psychiatrist is, and again I say I don’t have one relaying the story about the quick appointment I had with one. She shakes her head and says that she’s making a referral right now to a team of mental health professionals that are covered under the provincial health care plan so I should be hearing from them very soon.
I can feel my shoulders drop down a bit away from my ears and my anxiety soften – I’m being listened to.
We talked about my thyroid mass and the surgery. I mentioned that the mass had made me gain a lot of weight in a short period of time and that I’ve gained a lot of weight for me since getting sick due to the post-exertional malaise and feeling a lack of support and I’m not okay with it. I’ve just been told to move more in the past but that is such a struggle because of my illness. I talked about how I’m resigned to the fact that I’m overweight, but I’m not happy about it.
And instead of telling me to eat less and exercise more like every other doctor I’ve mentioned to this has said, this doctor said “We’ll work on that once we have some test results back. I can absolutely help you with that.”
At this point I could almost cry with relief.
I feel hope again for the first time in years – something I hadn’t even realized I had lost.
The rest of the appointment goes incredibly well where I feel my concerns are heard, that I’m actually seen as a person not just a “needy patient” that should be rushed through the doors as fast as possible.
She orders a lot of tests to get some more information on my new symptoms, we book our follow up appointment and I leave the office almost in a state of bewilderment.
I feel all of the emotions rushing into me and happy tears flow from my eyes. It almost doesn’t feel real.
I actually have a doctor besides my GP in my corner again.
I’m not going to have to keep fighting, advocating, and working so hard to not fall through the cracks of the healthcare system.
I have someone who is interested in helping me.
It felt like the sun was coming up and a part of me that had gone dormant was coming back to life again. I had hope because I was actually getting the help I needed and didn’t have to figure it out on my own.
I had hope because I had someone smarter than me thinking about all of the things I knew nothing about.
I had hope because I knew that I wouldn’t be missing anything with all these new symptoms. A diagnosis would be coming, or it would be attributed to my current diagnosis of Myalgic Encephalomyelitis – not just dismissed as the M.E. without doing any investigations.
The next two weeks were full of medical appointments and I was exhausted by the end of it – but content.
When you’ve lived some or all of your life not feeling heard, understood, or worth other people’s time it’s hard to feel that hope. But when someone says those powerful words “I believe you, can I help?” it truly feels like the clouds have parted and the warm sun comes down on your face like a hug.
This is exactly how I feel when I listen to the song called Sun Comes Up by Rudimental. It talks about the struggle, the brokenness, and the tears we feel before that moment where our hope is restored.
So if you’re feeling like you need to be lifted up – this song is for you.
If you’re feeling down and out and are exhausted by always fighting for yourself, don’t give up. The hope you’re searching for might be just around the corner like it was for me.
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