Self Diagnosis

I think this is probably the best place to put this... but I didn't ask when I joined, and I realize now I should have. What is everyone's stance on self-diagnosis? what is the forum's official stance on self-diagnosis?

Hi Zobo,

I'm a habitual "self-diagnoser". Personally, I believe it's always good to get a medical diagnosis. The fact is, many of us aren't equipped to make proper diagnoses and prescribe the most effective treatment. Self-diagnosing is basically guessing what you think is wrong based on your limited knowledge. My personal experience has taught me that that approach can lead to frustration and prolonging or worsening the illness (if there really is one).

All I know is that it could lead you to being a hypochondriac if you get too far into it.

Hello zobothehobo,

I don't believe that the forum has an official stance on self-doagnosis but I do know that none of us can diagnose someone else on here. We can give ideas and opinions but we can't make a diagnosis as it is a peer - led self-help online community.

I'm not sure whether trying to diagnose yourself is a good idea, you can take online tests Psychological Tests and Quizzes but really you need a professional face-to-face consultation.

I am going to go out on a limb and disagree with pegasus, to a point.

Sometimes self-diagnosis is the only option a person has due to financial status, family life (especially in an abusive environment, one must be careful), race, gender or trans status, autistic status, and disability. It can be both dangerous for some, and impossible for some, to have an official diagnosis with a professional done. Socioeconomic status also plays a huge role here.

For example, one of my friends knew she was autistic her whole life. Especially when she self educated herself and spoke to others. When she finally left home and her university offered her a screening, alas, she was diagnosed as autistic.

There is nothing wrong with self diagnosis. Especially if getting to a doctor is an impossibility for the individual in need of diagnosis. It leads to self education, self discovery, and sometimes healing.

What you want to avoid is what was stated above and becoming compulsive and having it turn into hypochondriacism on you.

Take care.

Hello, zobothehobo. I do not feel qualified to answer your question. You may choose to self-diagnose. If you do, do you intend to implement a treatment plan too?

For me the efficacy of self-diagnosis is dependent on many factors. There are a lot of articles online discussing the issues. Here is one:

When Self-help Is Inappropriate - Online Self-Help Book for Mental Health, Mental Illness

my own opinion is that self diagnosing can be a very dangerous thing...

examples...

I know someone who was told by people in an online forum like this that yes they had DID..reason they heard voices and seemed to switch into alternate personalities..that person is now dead. he died of cancer of the brain.

I know someone who self diagnosed their self as having bipolar disorder. their reasoning...they went through highs and lows and what appeared to be hypo mania. turned out their problem was normal stage of life called peri menopause / menopause.

I know someone who self diagnosed their self with schizophrenia, turned out they were just going through the normal process of pregnancy /anemia/ which was causing them to have hallucinations/delusions.

I know someone who believed their self to have DID because their vision kept changing, their moods changed, heard voices, had trouble with memory, lost time, ...turned out they had diabetes.

I have at times assumed something was part of my mental disorders only to find out it was something different..Multiple Sclerosis. sometimes I would think something was a mental or physical problem and it turned out to be stress or sleep deprivation (lack of sleep) or not eating correctly for my body's needs.

my suggestion if you think you have a physical or mental problem its well worth it to consult a treatment provider in your off the computer location. please dont leave it up to chance / luck of the draw/ roulette of self diagnosing. you may be doing more harm then good to your self.

But, not everyone has access to doctors, not everyone can afford doctors and some people have medical related trauma or cannot see doctors for other reasons

and your opposition of self diagnosis throws every single one of these people under the bus

I think it depends on who you are. If you are not prone to drama and fright, I don't see a real issue with a certain amount of self diagnosing. I knew what I had long before my official diagnoses, and they did not clash with my own beliefs (maybe I just have good insight).

It meant I could partake in the aspie community three years before the DX. I wouldn't have wanted to just sit back and wait for the all clear from a doc. Also, if I had not really pushed to get the diagnosis and treatment for depression, I would not have been here. My doc was hellbent on that I was NOT depressed. I am glad now I did push it and that I knew myself as well as I did instead of believing her and despairing alone.

If i self diagnosed, I'd have given myself a lot of various labels.

None of which my pdoc gave nor any t recommends.

I believe it's easier to address behaviors that you'd like to change or thought processes. Much would be done on your own, as is.

Self help books, in person and online support groups if money and insurance are a concern. Even talk to your primary doctor.

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I think if you're self diagnosing with a view to getting treatment only a professional can sanction - then i don't really see the harm. But usually to access that treatment you have to be professionally diagnosed. That's how it works here. I think it's great to be as clued up as possible especially if you go and see someone who has malpractice down to a fine art...but with that comes frustration, especially if you know you can't access what you think you will help without someone listening seriously to your concerns. If you're using self diagnosis as a means to try and justify certain behaviours or to deny responsibility for your actions then i have a problem. It slowly wrecks that persons life even more (usually without them seeing it) and what does it do for the stigma and difficulties faced by people who actually have that disorder and are trying as hard as they can to change?

A lot of variables but regardless of who gives you a label, if you don't intend to do anything constructive as a result of it - i just don't see the point.

There are many issues with self diagnosis. It's not possible in many cases to take a step out of yourself and take an 'objective' view. For example, if you are in the middle of psychosis, there is absolutely no way of realizing that is what is happening, psychosis involves loss of being in touch with reality. On the other hand a person may be suffering a panic attack and try to self-diagnose and think they are psychotic or dying.

It is akin to having a physical illness where a correct diagnosis is needed by a doctor that has trained for at least 6 years, psychiatrists train longer than that. For example - it's like thinking you have cancer of the bowel or something, yes you can read up on it and learn what you can but at the end of the day you need a professional to diagnose. And then of course, the access to treatment.

Take care.

I do not have anything against self diagnosis; I think we know ourselves better than someone else can and don't need a profession to tell us we are "anxious" or "depressed", etc. Diagnoses are used by professionals to help a patient/client, prescribe the right meds, or know what direction to work in but I don't know that self diagnoses can help/hurt more than professional ones or that professional ones are necessarily necessary If I go see a therapist complaining that I am anxious all the time, fine; they will probably work on that with me since it is me and what I want to work on. However, if I go to a doctor complaining I think I am bipolar I expect some tests and ideas on their part, starting with "why do you feel you are bipolar?" and a bit of work to learn my medical history, etc. before prescribing meds. But I think most mental health diagnoses are based on questions asked us about ourselves and I think we can come to some of the same conclusions as a professional, with regards to most mental health questions.

I agree that some self-diagnosis is okay, however, there are times when we have to go beyond self and seek professional intervention, or we may end up fighting a battle with the wrong set of weapons (and wasting precious money). I'll give 2 personal examples:

1. Some years ago I diagnosed myself as having a cold and self-treated. Now, I knew I also suffered with allergies, but wasn't alarmed at the symptoms until something in the back of my mind insisted I see my GP. Turned out I had a really bad respiratory infection.
2. As a child, I knew I had depression. I dealt with it on my own. In my late 30s I started experiencing symptoms that suggested I had low blood pressure then low blood sugar then low iron. None of these were strange to me. So I adjusted my diet and kept adjusting until I thought I saw improvements. But those "improvements" were always fleeting. I was unemployed and very low on money, so going to the doctor was out of the question, until I realized I could no longer "read" my environment and felt I had lost touch with my surroundings. I listed all my symptoms, including the physical ones and went to my GP the next day. That's when I received the official diagnosis of major depression and enlightenment on the physical effects of an illness I always thought was purely mood related.

Going to the doctor can be really tough when you have no money. But, where possible, seeking medical help is important especially when you feel your health spiraling out of control or you haven't felt like your usual self for a while.

But yet again you're forgetting that not everyone can receive an official screening/diagnoses by a professional. It's very, very simple to have an idea that if someone feels something is wrong, they have the ability to get to a doctor of any kind for a DX. The idea is flawed and it is wrong. My own line of work can tell you that as I have seen women being treated for assault ten years after the fact as they could not find a doctor that A) took their insurance B) had an acceptable sliding scale system.

I dislike when people relate a mental illness to a physical illness. I am extremely ill (chemo for almost a year, physically disabled, etc) and I didn't have insurance when it started. What did I do? I reached out to medical communities online and discussed symptoms. From that, I went down the list and was able to see it was more likely than not an autoimmune disease. When I DID get approved for medicaid, after a load of tests and doctors... it was 2 autoimmune diseases.

Could I have treated myself without the doctors? No, of course not. But that isn't the issue here.

The issue is realizing not everyone is in a position where they can easily access medical care or treatment. Be that because they are in an abusive home/relationship, have had medical traumas from abuse by a physician, or physically cannot get themselves to see someone. An autism screening where I live, for example, runs at $2,500. Out of pocket. As some states do not just screen simply for autism, but for developmental delays meaning you're paying for more than you needed or asked for.

Another example, my brother, who was extremely mentally ill, found a psychiatrist that was on a "sliding scale". What did we pay after insurance covered $200? $3,460. For EACH 45 minute session.

The idea that it is as simple as anything to get a physician to diagnose you is simply ridiculous. Forgoing the recognition of socioeconomic stance as well as ability is reckless, and frankly, quite lazy. It perpetuates the idea that you can only be "really sick" if you managed to get insurance to cover you, or pay out of pocket.

I am not saying self diagnosis leads to self treatment. I am saying that self diagnosis can leave people feeling LESS alone MORE educated, therefore more knowing of free services they can MAYBE obtain for their usage.

Understand, not everyone is lucky enough to have some form of insurance or money to cover screenings. If you are. you're one of the lucky ones.

I am 59 and was not properly diagnosed until my mid 40's even though I went to 3 different psychiatrists in a period of 20 years. I knew something was wrong with me since I was a child, aged 11. As my life changed over the years I dated a psych RN and she said honey you have a problem. I said I know, I told her my history of 3 P's and 5 T's who all said the wrong things, well my RN took me to a new P and I cried the whole time I was so terrified of being told bull ****, she talked and told him my history, and he listened and then asked if I could answer a few questions. I calmed down and answered the questions and was finally diagnosed, medication trials ensued and now I am totally happy with my meds and feel so free finally knowing what my problem(s) is. I tried on my own but failed to get real help.

I don't think all the people who need help get it. Some need to take strong steps.

I took a medication for a skin disease for years that was extremely dangerous and you should not drink alcohol on that med. I started drinking at 11. The doctor never told me or my parents not to give me alcohol because I was under the drinking age. I was drinking rum in tea before going to school. We had wine sometimes at dinner. I discovered on my own that I wasn't supposed to be drinking.

We do have to be our own advocates, study, ask questions and not give up. Not give up on ourselves. Why didn't I go to P after P until I got help? I didn't have the money. I didn't have insurance.

Hi Grey Matter,

I don't think anyone was insinuating that it was a simple thing to get a physician to diagnose you. Nor do I think that anyone was specifically forgoing socioeconomic stances either.

Many members live in different countries with different socioeconomic situations and different levels of healthcare. Even in the states, each individual state can have different laws regarding help for indigent and/or uninsured people.

I believe that we all do a bit of self diagnosing from time to time, whether it be for a physical or a mental issue. Talking about the issue and getting feedback is important because sometimes it can open up different ideas of what a situation may be and different ideas of how to get diagnosed properly.

One must admit that there are times when a self diagnosis is way off and tending to it ourselves can be not only overwhelming but dangerous as well. That is why it is so important to do ones best in finding the professional help needed.

There is no happy medium here. There are just as many reasons on either side of the coin as to why someone can't find professional help as there is for absolutely needing that professional help. No one can know absolutely what another's situation is, all we can go by is what is told to us via posting on a website.

Those who have posted that it's important to get a professional diagnosis are not wrong anymore than you would be wrong in bringing to light that some people don't have access to professionals. These are simply different ideas and situations on different sides of the coin. There is no ill intent nor laziness on anyone's part here. Both sides of this coin bring important information to the table and can bring about networking and help to others. That's what it's all about here, no?

I know that I appreciate both your insight and that of the other posters here. Thanks so much for everyone's input! Our own personal experiences are very important and very valid.

With care,
sabby

I didn't really see her as comparing mental to physical, but sometimes, for instance in my own, what may seem psychological, can be a serious physical illness(in my case MS),and vice versa, another poster mentioned thinking it's physical when turned out MDD.
No, not everyone can be treated due to financial reasons, but sometimes it's better, when health issues arise that debilitate, to find out financial options.

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And when there is no financial options, then what is there?

I keep posting here to remind and promote the reality that some can't just fall into a place where money is available or free services are either.

This is just frustrating me and making me upset, so I am done with the discussion all together.

We should not forget using online tests is self diagnosing. These tests use what data we put in, data based on self assessment. If we are totally against self diagnosing, we must be against those tests.

Bluntly - doctors and such have their own beliefs and that effects what they think is wrong and how they think they should practice medicine. Example - deaf - and past 50 =dementia. Parkinson's + deaf =dementia-let them die, help them die.

A friend lost her mother in a "so-called" excellent nursing home-2 years they tried to get daughter to allow stoppage of food through feeding tube. Feeding tube is for inability to swallow safely-dysphagia. My profession is 80% dysphagia. I am now aware of mother's overall level of Parkinson's-I have at least 20-30 patients far, far worse with Parkinson's, ALS, Huntington's, MS, repeated stroke, as well as things no one bothered to diagnose. They are eating, drinking, sometimes being fed)- altered textures, viscosities, speed, timing, positioning. And they are safe as long as they follow the prescription for all the above, and usually content. 1 patient, some CNAs had senior RN convinced patient was aspirating badly. Then 2 CNA's, listening, said no, just follow directions on the wall. Point of view, and yes, disrespect for the sick and elderly.

Whoever you get help from, and you'll need some, has a point of view. Their background, your sex, age, race, everything is included.

I had a problem. MDs-couldn't figure it out-I didn't fit usual pattern.They admitted it was real. I made a list of all symptoms, even ones that seemed irrelevant. I found all possible names for those symptoms. I took grouped 4-5 of symptoms at a time and played google. I did it with all the symptoms - coming up with at least 50 different searches, symptoms phrased differently. Results confusing at first. Then realized that 4 diagnoses kept coming up on all searches, some as rarities, some not. I checked, double checked, researched each. 2 I would be dead in 6 months - forget them. 1-I would have had to sell the MD.-test might not have shown it, despite symptoms being textbook. Md's look at tests, not reality. Last 1 related to the 1 before, but I could handle with massive across counter supplements-the level for diagnosis #3 and would always require a prescription. I got better.Told MD-he ran a test-"you're in low normal range" - for me that's always low. He shook his head. Yhat MD decided I made him uncomfortable a month later and dropped me.

Normal is just-for ex. 1000 people, 150 - incredibly good health, 150 really horrible people, 700 somewhere in middle. There are no standards of healthy.

1)Research, document. - over and over. 2)Check with friends-do they see you displaying what you think is happening, or are you imagining things. 3)do they ever have similar responses and you didn't have standard to go by for what is usual? 4)What can you do on basis testing? - example -school counselor would only send students for outside ADD/ADHD evals. if they passed the Cola test. Standard ADD/ADHD respond to this(caffeine) for 15-30 minutes-student drank all day. Observation by others, not student, of all aspects of behavior with and without the cola. Saved that school district a lot of money.

Self diagnosis - do your homework - be as rigorous as if your life depends on it - it does. Example-ADD/ADHD forget to carry out suicide, but incredibly accident prone and get killed that way. car insurance companies provide that data-you can check on that too.

Accept criticism of your research-quadruple check everything.

Way to use an extreme to define a norm. By the definition of extremes, these are outliers.

What harm did this diagnosis do?

So they were pregnant and didn't tell their doctor about hallucinations/delusions? At that point, it's not self-diagnosis's fault. When you're pregnant, you tell your doctor EVERYTHING because it's ALL relevant. Also, did this do harm to the baby? Anemia is quite common in pregnancy because the baby takes the iron from the pregnant person. If untreated with iron supplements, iron levels will go back to normal after birth.

Extreme to define a norm. Also this person had a very atypical case of diabetes, or they had physical symptoms they didn't think were related. I mean it's atypical anyway because hearing voices doesn't even appear on diabetes symptoms lists. At any rate, not paying attention to all the symptoms and diagnosing based on the symptoms you deem relevant is something that doctors deal with too. They misdiagnose too. All. The. Time.

This could have been written by my mother. Except she WAS diagnosed with depression only to be RE diagnosed with MS. That thing I just said about doctors misdiagnosing........


My personal position is there's nothing wrong with self-diagnosis. You cannot receive treatment through self-diagnosis and self-medication is a very different issue. Research is key, but pretty much everyone I know who has self-diagnosed has researched and researched and researched. At the end of the day, it leaves people feeling less alone, more understood, and less scared. And that's really what we should hope for people.

No one has ever been able to give me a reason why self-diagonsis is wrong. Just outlier stories of people who missed symptoms and who misdiagnosed themselves. Usually, these stories are presented to me by people who think that doctors do no wrong. Who have not seen their family members and their friends misdiagnosed and thrown under the bus by the medical community, who have not themselves been thrown under the bus by the medical community time and time again.

I'll end here with a story. This isn't so much self-diagnosis as it is unqualified diagnosis.. but from the time I learned what bipolar was... I was about 10. I diagnosed my father with it. He had been officially diagnosed with major depression, but I knew that wasn't the whole story. I saw him in mania. I knew what that meant. I even approached him about it, and I knew he had already heard that before due to his reactions. But he didn't want to face the truth, I guess. He got addicted to drugs chasing the mania and alcohol to try and forget the mania while in his depressed states. Last year, he finally brought these thoughts to his therapist/psychiatrist while detoxing from meth. How much pain would my family be spared if my dad listened to 10 year old me's diagnosis?

My diagnosis is Bipolar disorder because the insurance co wants something common. My T says I have an avoidant attachment disorder. So, I guess everything depends.

Self DX or not, I think being critical is always good. I mean they wanted to diagnose me with schizophrenia, I had to really fight that.

"But you DO hear voices!"
"No, I do not."
"The VOICES told you to say that!"

Sigh.

Or "You only have Sjogren's, no other autoimmune!"
"But my issues started years before I got dry eyes!"
"Oh wait.... then you have lupus too!"
"Eh... okay?"

They are not aliens or perfect. Sometimes they too just guess. My guess is usually better.

Hello, zobothehobo. I am sorry you are offended by some of the responses. In fairness, I think the assumption you make is not found in the responses.

I wish you well.