Tag: disability affirming

There’s a few factors that have been very important to me in pursuing diagnosis and learning to manage Long Covid, Fibromyalgia, ADHD and autism, over the last three years. Not to be underestimated is the support of a good doctor, and trusting yourself and your self awareness of your condition well enough to identify said good doctor and to walk away from those who aren’t helping. But first, I’d like to talk about the support of whichever corner of the disability community you call home.

Disability Community

It might seem odd starting with community when this post is mainly about developing awareness of your condition and potential issues navigating medical professionals. But when (to everyone else’s knowledge) you’re the only person you know who, in my case has; ADHD, autism, Fibromyalgia and in 2022 Long Covid; community is important.

This is especially true if you weren’t born with a disability. If, like me, you were just living your life, in my case running 4km multiple times a week, then one day you could barely walk, breathe or think (this is me from able-bodied to Long Covid). For chronic illness later in life, and I imagine any disability resulting from an accident or degenerative disease, its a BIG adjustment. And suddenly a major impact on your life falls outside the knowledge and understanding of most people in it (perhaps everyone you know). That’s where community comes in.

Disability Community- Get One

I learnt a lot about Chronic Fatigue limitations and managing my long covid from 2022 Twitter’s Disability community. I’m now learning from, connecting with and enjoying speaking to people on Blue Sky’s ADHD & Autism Feed, Neurodiverse Feed, Chronic Illness and Disability Feeds. These are totally informal round ups of individual people’s posts, which make it easier to share experiences, complain, commiserate, celebrate with and ask questions of people who ‘get it’/ us.

When I first realised I had Long Covid, it felt less scary seeing that others were in the same boat. This was a new illness, the medical profession had only just begun scratching the surface , no one I knew in real life had the faintest clue, but other people were suffering from it. Other people were living with it. Seeing their posts and reading articles encouraged me that we would find our way. (Took me 2.5 years but I got there –cutting back to part time work was the KEY).

Reading ADHD traits in other people’s daily lives was also validating for me as I sought an ADHD diagnosis, and it helps me feel connected now. Meanwhile seeing what other’s say about how autism impacts them and how I do and don’t relate to other people with autism is also helping me develop my self awareness.

For all four all four types of disability I’ve personally experienced, community has helped. I recommend seeking it on your choice of social media by searching relevant hashtags/ keywords. If relevant, you might want to seek out online or local formal support groups as well.

A Good Doctor

I know, they’re so hard to find —especially in rural areas. And if you have multiple disabilities, there’s the issue of finding a doctor who competently and open-mindedly supports you in managing them ALL. And who does so without being skeptical of one’s existence or biased toward misdiagnosing the other one(s).

For fellow spoonies, there’s also the issue of finding the energy to find a good doctor, if yours isn’t fully adequate. And there can be the need for a doctor who understands the links between conditions. For example maybe that woman doesn’t ‘need’ antidepressants and maybe her anxiety isn’t random, maybe she (and the world) need to adjust to her having autism or ADHD, or both? And maybe her back pain isn’t muscular, maybe its stress from the strain of the above?

Sure, this is just my observations as a person with only personal and second-hand knowledge of such things, but the more I learn, the more it seems your mental, emotional and physical health are interrelated. That any one of those three having an issue can stuff up one or both the others. So if you’ve got multiple ongoing disabilities, you NEED that good doctor who gets the BIG PICTURE for all diagnosis and relevant treatment/ management reasons.

My Doctor Wasn’t Good

I thought I had a good doctor. He listened, he was reassuring, he made me feel comfortable about some other issues that could have been quite serious, but turned out not to be. Then I got long covid. He got me to do standard medical tests, like bloods and an ECG to check my heart ect. When standard tests did not indicate standard (pre-covid) medical conditions, he handed me a survey to ‘explore other options’. Said survery basically asked ‘are you depressed’? in ten different ways. No, I wasn’t depressed. But having my GP try to misdiagnose my obviously physiological illness as depression did cause me anxiety about finding treatment for unknown condition.

He Had to Go

At this time I was fatigued, in chronic chest and back pain and brain fogged. I was teaching full time and very low on spoons. But I was lucky. It was 2022. I knew scientists were only just beginning to study, research and learn what the bloody hell long covid is and what it does to the human body. I knew many doctors could still be very ignorant of this.

But I hadn’t expected to come up against prejudice blocking my path to diagnosis. Luckily my doctor let slip enough for me to suspect that he had long covid, and didn’t want to admit it. And that that bias was compromising his judgement in diagnosing me. It was very clear I needed to walk away. Friends and my mother, whom I spoke to when I had the spoons, backed me fully and I felt empowered to seek a new doctor.

My Experience of Medical Prejudices & Biases

Enter doctor two. Consultation one, my most troubling symptom (which she mainly wanted to hear about, as opposed to symptoms which clearly pointed to long covid) was chronic pain. So, despite my insistence that my mental health was good and depression made zero sense, she prescribed me valium. She pretty much tried to convince me it was depression. One’s a coincidence, two’s a pattern.

This is how I learned there are doctors who prefer to diagnose based on the conditions they personally are most familiar with. That some will ignore any symptoms you name that disagree with their diagnosis (I didn’t have the spoons to test it with doctor two, but for doctor one this was certainly the case). This is when I became aware of doctors who misdiagnose physiological illnesses like long covid and Chronic Fatigue Sydrome, as psychological. Maybe because depression is more common, or more in line with their professional experience, personal bias, whatever. It didn’t help me.

How I Found the Right Doctor

As I said, I was low on spoons and not truly quite ready to accept that this time I knew best, and two doctors didn’t. I took the valium, got home, got angry, threw it in the bin and turned to friends and my mother. Comments from my mother like “but you never take pain killers” really helped me see beyond doubt that this was BAD, physiological and I needed a doctor who understood.

Starting to understand I was fatigued and struggling to find good doctors, my mother got me onto Hot Doc. Its an Australian online booking service with filters that let me search for doctors in my city who specialise in chronic illness. I made an appointment. Doctor three let me talk —probably beyond what he needed to hear for diagnosis because he could see I needed to get it off my chest. Then he said, “That sounds like long covid. But you already knew that?”

Yep, got the one!

I was SO relieved to have a doctor who knew what he was dealing with (I was his fourth long covid patient). He could reassure me that having stumbled for four months on my own I was on the right track with fatigue management. He also have advice on balancing that and exercise, and bothered to test my iron and B12 (both were low) and got me on vitamin supplements.

When I recovered from Long Covid and still had pain and fatigue crashes —he knew Fibromyalgia was a possibility. He correctly diagnosed that and prescribed a pain killer that for the most part kep my chronic pain at bay. (This was while teaching full time. I now work part time and no longer need pain medication. I’ve learnt pain is my body saying ‘fucking stop and rest’ and working no more than two consecutive days a week now, I’m nearly pain free).

Patient Awareness

Medical Malpractice that Could Have Impacted Me

Having had two doctors fail me, I realised it was a good idea to do what little reading I could find the spoons for. At the time it seemed Chronic Fatigue Syndrome was as much a possibility as Long Covid. So when I came across articles about doctors whose outdated —not to mention medically discredited— approach to treating CFS causing harm, I read them.

Luckily Twitter (not yet completely destroyed or corrupted by Musk in 2022) still had doctors tweeting good resources. That’s how I learned about PEM (post exhertional maliaise). And some doctors acting on now discredited beliefs telling patients with Chronic Fatigue Syndrome to exercise, which makes CFS symptoms worse and can cause PEM. I also learnt of the myth CFS sufferers can ‘make themselves better by changing their attitudes,’ outlined and linked to Long Covid scepticism in this article.

By the time I saw my third doctor, I was ready to run away from anyone who told me to ‘exercise and work’ my way out of long covid. Ready to defy out-dated medical advice. Luckily, I didn’t need to. (Though interestingly, with Fibromyalgia, balancing my part time work week with exercise is proving my best defence against fatigue and chronic pain. This is perhaps because I was extremely fit before becoming chronically ill in my mid thirties).

Safeguarding Yourself/ Family

I know, the last thing you need when you’re managing one or more disabilities is safeguarding yourself against a medical professional whose judgement could do you harm. In a world free from racism, misogyny, transphobia etc, that would be easier. Its the last thing you need when when you’ve got a condition that really limits you physically and or emotionally/ mentally. I’m thinking particularly of early Long Covid patients told to exercise which further crippled them with PEM here, but in our imperfect world other circumstances may also apply.

But as I discovered with Long Covid, sometimes you’re unlucky and you’ve either got the wrong doctor, or the wrong doctor to help you manage your particular condition(s). So be aware of and on the look out for red flags.

Trust Yourself and Listen to Those You Trust

So should you feel a medical professional isn’t listening, that their advice is not helping, that their judgement is impaired by any form of prejudice; trust yourself. If it helps and is manageable, keep a record of your symptoms. Know how you were before treatment/ medical advice and after. Have it in writing so you can see for yourself whether treatment is making things better or worse, or which compromise is best. Back yourself up with knowledge of your body so you know when to say ‘no.’

Confession: between brain fog and ADHD I was shit at tracking my symptoms with Long Covid and initially just as bad with Fibromyalgia. But with the Fibro, my awareness of my own body, how much physical activity I can undertake, what kind and how often has been the single greatest factor in improving my quality of life. Similarly, awareness of my ADHD, particularly after I started taking meds, has helped me notice when futile to attempt certain tasks. Knowing yourself helps you help you, and helps inform that good doctor, to help them help you.

I hope you’ve mostly got access to effective, unbiased medical professionals who know what they’re doing. But the rarer and lesser known your condition, it seems the better and more necessary it is to hone your own awareness. And trust that awareness. And communicate it to medical professionals until you get one who listens, understands and work with you as you are are, not merely how they assume/ anticipate you to be.