In GP waiting rooms you will find many pamphlets and information sheets covering different ailments- physical and mental, all with the same purpose: to provide awareness, education, and advice on what to do next- effectively encouraging you to take the steps to recognise if these ailments affect you, and to take the first step of self-diagnosis by becoming self-aware.
The World Wide Web has enabled us to search for information, news, and education from all over the globe, including social media which connects us to others sharing their lives in all their glory- the good, and the bad via platforms such as TikTok, Facebook, Twitter, or Instagram.
In just a few clicks we can immerse ourselves into the worlds of so many content creators sharing stories and experiences.
For many people who have spent years feeling as though their experience has been solitary to be able to find others sharing their diagnostic journeys and symptoms can feel extremely validating.
Is Self-diagnosis via TikTok or Other Social Media Valid?
Communities are formed on social platforms, and within these communities, content creators share their experiences with ADHD, such as going through titration, diagnosis, and daily symptom struggles. In turn, others will share similar experiences, and provide support, advice, and guidance.
From my personal experience, TikTok’s algorithm began to share ADHD content in my feed. I began to find ADHD memes relatable, and this led to a great amount of reading and research. Finally, I was diagnosed with combined ADHD.
I was extremely mindful that not everything I found on social media or Googling is going to be completely accurate so I took it with a pinch of salt, and requested a formal diagnosis to be on the safe side. However, concern has been raised about the accuracy of how much content is available on social media.
A study by The Canadian Journal of Psychiatry assessed 100 of the most popular ADHD content on TikTok and found that 52% were misleading, 27% were based on content creators’ own personal experiences, and 21% were useful.
Sure, I get it- when this study was released, Tiktok videos were limited in length. Complicated information was edited down to fit in the allotted time frame, and with the editing, some content can become watered down and ultimately misleading.
The study also pointed out a great number of creators weren’t medically trained and are only providing their personal perspectives, and they may be describing symptoms that are comorbid to ADHD, such as depression, anxiety, EUPD/BPD, not to mention the overlapping symptoms between ADHD and ASD, which could also affect the accuracy of the content.
Why Are People Self-diagnosing Themselves?
Seeking a formal diagnosis sounds like it should be a simple process, but in reality, there can be many hoops to jump through.
Unfortunately for some, there are barriers that prevent them from seeking a formal diagnosis, so they settle for diagnosing themselves. (Please note that this article is based on the barriers in the UK.)
Some of the barriers to a formal diagnosis include:
Long waiting lists:
Depending on where you’re located, the waiting list could be up to 5 years for a diagnosis via the NHS.
If you’re seeking a diagnosis privately, this may be weeks or months, and then there may be a possible wait to join the list for titration.
The cost of seeking a diagnosis privately:
Private consultations range from £350 to £800, depending on the provider.
There may be additional charges for monthly titration fees, prescriptions, follow-up appointments, and administration and paperwork charges.
Not wanting to be “out of the ADHD closet”:
Even though mainstream ADHD stigma has begun to steer away from “naughty little boys flipping their desks”, some may still struggle with the identity of being ADHD for fear of judgement, or rejection. They may not want to be “outed” at work, or worry about applying for insurance.
Avoiding any potential difficulties with GPs or psychiatrists:
Some people may have experienced difficulties gaining support from their medical practitioners in the past, causing reluctance to approach them for a referral.
To seek a diagnosis for ADHD in the UK, you need a GP to refer you to a specialist for diagnosis (unless you decide to pay for a private diagnosis, then a self-referral is sufficient).
Do You Need/Require a Formal ADHD Diagnosis?
This will depend on your overall needs and the severity of your symptoms.
If you identify that you do fit the criteria required to have ADHD, but they don’t impede your day-to-day life, would a formal diagnosis provide you with any benefits?
Let’s look at what help is available that doesn’t require a formal diagnosis.
You don’t need a formal diagnosis to seek coaching or private counselling:
If you need to learn tools to help manage aspects of your ADHD, and if you have a good support system and feel you manage your symptoms well, then perhaps it’s worth having an awareness in the back of your mind that this may be ADHD, and if further down the line you do begin to struggle, the option of a formal diagnosis is there should you need it.
You do not need a formal diagnosis to apply for the Access to Work grant:
ADHD is classed as a disability in the UK so under the Equality Act 2010 if you require any small changes to help provide additional support at work, college, or school (aka “reasonable adjustments”), then it’s within your legal right to request help.
There is also help offered to help towards getting you back to work, and support if you’ve already set up as self-employed.
You don’t need a formal diagnosis to apply for benefits:
By law, you also don’t need a formal diagnosis to apply for PIP (Personal Independent Payment), but it may make applications and assessments more difficult without the diagnosis to back it up.
What Are the Benefits of Receiving a Formal Diagnosis of ADHD?
If your day-to-day life is severely affected by ADHD, you may want to seek a formal diagnosis to get access to medication. The most effective course of treatment for ADHD to this day are stimulants, closely followed by non-stimulant medication:
Stimulant medications are controlled drugs in the UK.
GPs can prescribe stimulants, but not before a clinician who specialises in ADHD has provided a formal diagnosis to the patient beforehand.
Many with ADHD struggle with identity issues caused by years of feeling as though they “didn’t quite fit in.”
Labels such as “weird”, “quirky”, “scatty”, “sensitive”, or “ditzy” will all contribute to low self-worth and struggles with identifying who they are beneath those labels, especially if they’ve worn them for so many years.
Diagnosis can provide a much-needed acknowledgement that yes, something has in fact been going on for you, and no, it’s not your fault- you did the best you could.
With a formal diagnosis, a specialist will be able to confirm exactly what is going on for you. ADHD can cause imposter syndrome which leads to self-doubt and a considerable amount of second-guessing, and a formal diagnosis may help ease your doubts.
There is also a chance that it may not be ADHD after all.
Even after doing your homework, there is still the possibility that it may not be ADHD, but something else that presents with similar symptoms.
It can be upsetting if you’ve done your homework and feel so sure, only to find out that it’s something else all along.
If this does happen, ask for the reasons why they don’t think it’s ADHD.
If their reasons are sound and they have taken everything on board, find out what your next steps are, what support is available, and treatment if required.
However, if you suspect you haven’t been fairly assessed, for example the specialist is challenging your diagnosis based on typical ADHD stereotypes such as “only children get it, not adults,” or “ADHD only presents as hyperactivity”, you’re fully within your right to seek a second opinion.
This is also why it’s important to do your research fully, including comorbidities, so you can “hold your own” when speaking to professionals, and advocate for yourself.
Everyone is entitled to decide to do what they consider to be the best course of action for themselves regarding their physical and mental health, but for your peace of mind and safety, please make sure you’re playing it safe by doing meticulous homework when self-diagnosing yourself with ADHD.
Unfortunately, self-diagnosis may be the only choice available for some. However, if you’re fortunate to have the opportunity to seek a formal diagnosis and it’s something you want and/or need, then this may provide additional support, affirmation, and a sense of belonging.
Thanks for reading, let me know your thoughts or comments!
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Other Links on the Topic:
ADHD diagnosis for adults ‘can take seven years’ (BBC)
My ADHD Diagnosis Is Just as Valid, Even When I Diagnosed Myself (The Mighty)