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diagnosis is just part of a journey, and should never be a destination.
Hey, it’s Saoirse, and I’m wrestling with a difficult subject, one that is apt to cause gnashing of teeth and rending of garments. Let me be clear – I’m not calling anyone specifically out. I can’t diagnose, positively or negatively…. but neither can the vast majority of the internet, even if (and maybe especially if) it’s about their own mental health. Is self-diagnosis always wrong? Nope! This is not a case of black and white, either/or, and I hope that as adults we can take a deep breath together and have a real conversation about it.
I think self-diagnosis based on information gathered from other self-diagnosed people on platforms driven by algorithms designed to zero-in on one position, and to reward extreme presentations while doing so, is an EXTREMELY BAD IDEA. And yet for some, that can be a significant part of how they decide on their own self-diagnosis, whether it’s for ADHD, Autism, DID, or whatever.
Yet bringing up differential diagnosis and misdiagnosis, or questioning the validity of some cases of self-diagnosis, is often met with torches and pitchforks. This is true even in my own system – heaven forbid we invalidate someone who might really have a condition! There is a concept that it’s better to accept everyone, including people with highly questionable self-diagnoses, than risk rejecting or invalidating someone with a self-diagnosis that’s correct.
I can appreciate the “keep the peace” aspect to that position, I really can. But I think it’s doing more harm than good. It certainly isn’t helping the health of those improperly diagnosed, and it’s negatively impacting the person with the actual condition as well. They have to deal with the misinformation and stigma caused by all the bullshit. Also, even if they are correct in their self-diagnosis, if they aren’t getting the help they need (professional or otherwise) that diagnosis may as well not be there.
Am I saying people shouldn’t research and try to figure out possible causes for their health issues? Not at all. It’s perfectly reasonable that if you find a lump in your breast that you worry and do research. Deciding that you definitely have aggressive cancer, and then using social media to decide what chemotherapy regimen you should put yourself on is foolish, though, especially when you haven’t even had a biopsy or other medical testing yet. Could you actually have aggressive cancer? Yes. Could you also not? Yes. Should you rush into a very specific kind of cancer treatment and put your body through a potentially unnecessary hardship? No! Are you qualified to make that call, even if it’s your body? Unless you are an oncologist, no. You shouldn’t be choosing chemo or radiation treatment for something that may not even be cancer.
Instead of self-diagnosing yourself with aggressive cancer, the better position is one of concerned uncertainty. Yes, our culture of instant gratification can make living with uncertainty extremely uncomfortable, but I maintain deciding to stay uncertain about your health is the proper response. You MIGHT have something, you MIGHT NOT. The uncertainty lets you have that conversation with people with more experience. Stating “I have aggressive cancer!” as a hard fact doesn’t allow for a conversation, just an argument. It closes doors that may actually have the proper answers behind them.
So, am I saying there should be “gatekeepers” to getting a diagnosis? Well, actually, yes. Should I be one? Hell no. Only qualified, experienced medical professionals can and should diagnose. Even then it’s a crap shoot because of overlapping symptoms and comorbid conditions. It’s an imperfect solution to an uncertain problem, but it’s the best we have.
That said, there are a TON of issues around access to good mental health care these days, especially in more marginalized communities. But a wave of questionable self-diagnoses is not the solution to that problem. Advocating for better health care is.
Should all professionals have a license? No, there are some serious creeps out there. But that’s why you can get a second or even third opinion. Dealing with uncertainty is slow going sometimes, but at least you’re not on a false path.
It’s OK to not know for certain. It’s OK to say you MIGHT have something, but you aren’t sure pending further diagnostics. It’s OK to have doubt.
It’s also OK to look at things you can do to improve your health while you are uncertain – no one is saying that if you possibly have cancer that eating a healthy diet is a bad idea. It’s possible to grow and heal while being uncertain.
With a disorder as complex as DID, there is a lot of uncertainty even with a medical diagnosis. There is long list of comorbid conditions that often tag along with the major dissociative disorders, any of which could be the real reason you are experiencing difficulty. Is it comorbid depression, anxiety, autism, or BPD? Who knows, it could be all of the above. If you are diagnosed with one of more of those comorbids, does that mean you can’t have DID? No. But you might actually benefit from treatment for those comorbids while you remain uncertain about DID. Keep an open mind.
A diagnosis should also not be the end-all be-all to your identity. I hate to hear “I’m DID”, especially from myself. You are NOT DID any more than you are cancer or COVID. You may be a person who HAS a dissociative disorder, but that is not who you are. You are a wonderful, unique, highly complex individual who may share a body with other individuals, but that doesn’t have to dictate the entirety of who you are.
Doubt about your diagnosis doesn’t have to be seen as an attack on your identity. Which is good, because if someone doesn’t doubt they have DID at least some of the time, even with a formal diagnosis, then I have my doubts that’s what they are dealing with. 😉 But those doubts are just another kind of uncertainty. I’ll say it again, I can’t diagnose. I can’t say who does and doesn’t have a disorder. I am not a medical professional. But dear reader, the chances are that you aren’t either.
If you’ve chosen to self-diagnose with a dissociative disorder, you’ve tried to diagnose a complex mental condition with a potentially unhealthy mind, based on incomplete training and information. While you could be correct, it’s much healthier in my opinion to just accept the uncertainty of not having a formal diagnosis. You don’t need a diagnosis to live as a system, any more than you need a diagnosis to transition to living as another gender. Do what works, and live your best life. If you want to be a really brave trendsetter in our community, publicly admit that you might or might not have DID, but that you have accepted the uncertainty for now and are focused on living a healthy life, whatever that means.
The rash of people poorly self-diagnosed via TikTok needs to stop. And I say that even though I’m a bit of a hypochondriac. The internet doesn’t make you an expert on anything – it sells you information in the hope you’ll keep consuming it and believing the lie. Wiki articles won’t ever be as nuanced or detailed as decades of schooling and clinical experience. The internet can help you gather your thoughts and bring possibilities to your doctors, but they are the only ones who can diagnose. Gather information, yes, but stay open to all possibilities.
Thoughts?
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1 Reply
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Oy vey.
It’s Sharon, and I’m not sure where to even begin. This is a complex topic that needs to be handled with a great deal of tact and care, and Saoirse isn’t the best at being tactful. That said, I’m not going to just brush this off and say “I don’t agree” and refuse to take responsibility. See the wiki article on System Responsibility for a discussion of why.
That said, I think we need to have a conversation about privilege. I know Saoirse isn’t totally blind to that topic, but the fact is, being able to get quality mental health care is an extreme privilege. There are many cases where it simply isn’t available due to location, finances, or multiple types of discrimination. The self-diagnosis issue didn’t just pop up in a vacuum. There are very real problems with the medical establishment.
It’s all well and good to say people should seek out diagnosis from “qualified, experienced professionals”, but those can be extremely hard to find. DID specialists are unfortunately quite rare. The average clinician doesn’t have the training or experience needed to properly assess or treat a complex dissociative disorder. They aren’t taught enough about OSDD & DID, and without some serious work on their part, including consultation with more experienced peers, they aren’t likely to gain that knowledge.
Are there cases of improper self-diagnosis based on viewing social media from other self-diagnosed individuals? Yes. Are there cases where someone has spent literally years researching the various possibilities for their mental health issues and has repeatedly sought treatment, but hasn’t been able to get the proper care? Yes. Lumping in TikTok teens with those people is unfair and a gross oversimplification of a complex issue.
Do I encourage self-diagnosis? No, and I really like some of Saoirse’s thoughts around maintaining uncertainty. But I also understand how someone stuck in a health care system that has failed them repeatedly could turn to self-diagnosis in their hour of need. Is it ideal? No. Should that person continue to seek out the proper care? Absolutely. May it take years, possibly even decades, before they find it? Yes. In the meantime, they just have to do the best they can, and that may mean accepting the possibility they have an undiagnosed dissociative disorder.
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