Self-Diagnosing
There's often a fair bit of stigma when it comes to self-diagnosing and in some situations it can lead to harm. There are other situations though where it's the best possible option. I'll provide some various ways people may self-diagnose and we can all share some thoughts!
- Diagnosing a flareup/attack/episode of a doctor diagnosed condition
I think many people don't even consider this to be self-diagnosing, but there is the possibility something else is causing symptoms. Often times people in this situation have a treatment they can use themselves or from a care giver and don't necessarily need to seek medical treatment from another facility.
- Testing has been done, doctor diagnosis not given
Someone may be seeking an official diagnosis or that may not be possible due to what can be diagnosed by the healthcare providers someone can access or chooses to access.
- Acute issue
I think many of us have had 'a cold' that we don't bother going to a doctor for. These are things that we expect to go away, sometimes home treatment can be used to ease the sometimes, sometimes treatments can be used to treat the problem beyond the symptom. Treatments can be a variety of sources, including prescriptions, some doctors will write a prescription one can fill for common actue problems, similar to the first situation of flares.
- Not dealing with the medical system that can formally diagnose
This may be due to access issues, lack of trust or other reasons. Sometimes others may be involved with some advice who cannot legally give diagnoses, for example here, a registered massage therapist cannot offer diagnoses.
Questions:
1. What's your opinion on self-diagnosing? Does it vary on the situation?
2. Is there another situation where someone may self-diagnose?
3. Have you ever engaged in self-diagnosis?
4. Any tips for people dealing with the various situations?
@AffyAvo
This thread topic is probably inappropriate to talk about and too controversial for 7Cups. It's just too dangerous because people may get the wrong ideas. So the moderators would probably have to censor things on this thread.
Most people are probably not competent enough to do self-diagnosis beyond what the medical establishment and insurance companies expect one to do per guidance they provide.
All I will say is...
I always... no matter what the situation.. think I should learn as much as possible by searching the web for reliable sources, including diagnosis-decision-guidelines and tools that physicians use.
I assume I always know more than the physicians about my history and things about my life-style that could be impacting my situation and also relevant symptoms I recall. But I simply can't tell them everything I know. They won't listen even if I did because they don't have the time or think it would be worth it. So my deep self-knowledge should be part of my self-diagnosis that is above and beyond what the doctor does. In the end, people have to make their own decisions.
To help me, I always keep a record of my observations (symptoms and possible causes).
I always look over all of my test results and learn about them on the web. I have found things that the doctors never told me but I think they should have. Perhaps they didn't know or didn't care.
Also...
Sometimes you have no choice but to self-diagnose if it's an emergency and it needs a quick decision and action and there is no one else there.
But these days you can get some help on the phone to do the diagnosis in an emergency.
I was able to contact a nurse covered by my insurance company recently to help me diagnose an emergency situation.
Then I did what was recommended per the nurse and also per what I read on the internet. In situations like that, the quality of the diagnosis help you get on the phone can be very limited. You may have to do a lot of diagnosis on your own too using the internet to get the best overall result.
I know other people who had similar situations having to contact a nurse or physician on the phone to help them diagnose and take emergency action at home.
Please forgive any typos above.
@7motivation I hope this isn't seen as inappropriate. I'm not tellling people to give medical advice with this. When getting support with heallth issues I have had moderators in the past bring up self-diagnosing and often with a bit of a judgemental tone to it, so if it can be brought up negatively I would hope the positives can be brought up.
For me personally, self diagnosing things like asthma attacks and HAE attacks means I can self treat, as my doctors hope will be done. There are better outcomes when doing so ASAP instead of waiting for medical help from professionals. With the HAE attacks and the difficulties of self-treating when I was in IV training there were times where I would put if off, see a doctor (if already planning on going, or when a walk in clinic was right there) or phoning the province's health care line. Those professionals aren't specialists, aren't familiar with my condition and often would give bad advice or tell me to do what I knew. In one instance a doctor was examining my throat to see if he could see anything and in that process my attack became worse and I then any doubt that it was a laryngeal angioedema attacks was gone for me. He still couldn't determine anything himself - but luckily was in full support of me self-treating and offering assistance with self-treating.
@7motivation
" This thread topic is probably inappropriate to talk about and too controversial for 7Cups. It's just too dangerous because people may get the wrong ideas. So the moderators would probably have to censor things on this thread. "
For those of us living with a disability, we face issues daily that may surprise you. I saw doctors for six years and had many tests before I had any diagnosis. I have met people who waited twenty years for a diagnosis. In a situation like this is CRITICAL. A person takes responsibility for their health and sits in the driver's seat regarding managing the path to wellness. Often doctors need to be managed in the same way you would manage a legal team. They want documentation, they want proof, they can be inclined not to believe you, and you need to persuade them.
It is important for a person to do research and be educated about their condition, about new research coming out, and to explore possible explanations for their symptoms BEFORE they see the doctor. The doctor is not going to do this for you. I have informed my entire team of doctors regarding clinical studies that have been completed that directly impact the recommended treatment strategy for my illness. They had no idea; they do not keep up with this.
Some examples of when self-diagnosis has helped me follow. I have a broken toe, and the break causes pressure on a nerve that results in a referred sensation of pain in my lower back. No doctor was able to help me with the pain. I saw a physical therapist, and they provided me with exercises but never detected the broken toe. I discovered that if I use a homemade splint to hold my toe in place, then the fracture does not pressure the nerve, and my lower back pain is improved. I have other symptoms that also improve. Another example of self-diagnosis is going through a series of steps to improve my gut health. I was in distress but was not seeing improvement. The last step was to try digestive enzymes, which are available over the counter. This was so helpful to me that it was life-changing, and it improved many symptoms and relieved my distress. I informed my doctor that I was using digestive enzymes, and it was helping me and that I was concerned that I have some issues with my pancreas. My doctor wants to run tests, but we are waiting due to the pandemic, and as the issue is resolved, there is no rush.
There are potential pitfalls to using self-diagnosis. I may not guess correctly, or I may not have enough training to see all the possible causes of an issue. But these concerns can be addressed by having good communication with my medical team. Notice that I informed my doctor that I was using digestive enzymes. We will be conducting more tests as a result of my experience and my communication with my doctor. When I informed my doctor about my broken toe, I got a minimal reaction, and I am inclined to think the doctor does not care about this issue. For me, it resolved years of pain and suffering. It is important to understand that people have a skill set. A doctor may be excellent in some situations such as prescription or surgery but not skilled at all regarding a broken toe and referred pain or digestive issues or nutrition or lifestyle changes that can improve a condition. Therefore, it is important to work with self-diagnosis, keep the communication open, and use tests appropriately. It gets more complicated when a doctor and a patient disagree, and I am not going to address that here because it will vary on a case by case basis.
The bottom line is that we have to live with our health condition and the medical system as it is. We have to find avenues to improve, and the medical community has genuine limitations. Self-diagnosis can be vital to a person's wellness. It is important to avail ourselves of the benefits of a medical diagnosis. Sometimes, we need to incorporate a combination of doctor-recommended treatment and self-diagnosis approaches.
This topic is crucial, and it has a place here in the Disability Support Community.
@BlindGrapefruit
Good points. Hopefully the forum mods agree. I'm just trying to stay out of trouble with them by being very careful.. so I try to alwasy "err on the side of caution" rather than push the guideline limits.
@AffyAvo
I see nothing controversial about it. At least 50% of the people here have self diagnosed, usually some of the first posts people make contain the words they haven't been officially diagnosed but they think they may have this or they may be that.
The first sentence alone warns that in some situations it may cause harm. I think in many cases common sense should be used. Granted this is 2020 and common sense seems to be some what of a super power. I think it does depend on the situation. In some cases doctors can sometimes dismiss complaints or disregard what they're being told. So you do some of your own research and maybe try something on a homeopathic route. Which most are completely harmless.
I have self diagnosed, yes. Nothing that would probably be considered life threatening though.
I apologize, I have no tips.
For what it's worth people have self diagnosed for years and will in many years to come. I see nothing wrong with putting information out and what may very well be personal experience.
@mytwistedsoul Thanks! No need to answer all the questions but I feel like you have a hidden tip in there - if people are self-diagnosing they can know they are in great company!
I think the controversy comes from much of the stigma associated with the word. I think it is often connected with 'they should see a doctor'. Most people will recognize that not all medical issues warrant seeing a professional and in the other situations at the very minimum we should acknowledge why someone can't or won't get medical care. And many times people fall between not talking to a professional and getting an official professional diagnosis.
Your point about common sense is a great one!
@AffyAvo The sad thing is that many times the doctors simply don't see us as individuals. Maybe they see just numbers or maybe they see that 90% of the people have other sysmptoms associated with this or that. As a result people fall through the cracks and end up suffering for years. Most doctors have only a certain amount of time they give each patient they see and it's hard to get to everything in one or even two visits. Now with this virus and the rules they have in effect, it's become even harder to see a doctor in person.
As you stated in a previous post about asthma attacks, if you were to wait for a doctor to say to use your inhaler or a nebulizer chances are you would end up getting worse and could end up in a life threatening position. It's the same for migraines or those who are diabetic. Many times people will do or try anything to make their situation better.
@BlindGrapefruit Had a very good point about doctors skill sets. Many of them do just generalized health issues, which is why they usually end up referring people to other doctors, but sometimes the run around is exhausting, both physically and financially. As with @BlindGrapefruit's toe, This has actually happened here. A doctor's appointment was made for a possible broken finger. The doctor sent us to a radiologist for x-rays, but they wouldn't tell us their results. They sent them back to the doctor and another appointment was made for there so that the doctor could say it wasn't broke. I'm not sure why it was such a secret that they couldn't just say this themselves. It took a week to find out that the offending digit was just badly sprained and they basically did what was already done and taped it up. Even with insurance those co-pays add up pretty quickly when you're bouncing back and forth between a few different doctors.
@AffyAvo
1. What's your opinion on self-diagnosing? Does it vary on the situation?
2. Is there another situation where someone may self-diagnose?
3. Have you ever engaged in self-diagnosis?
4. Any tips for people dealing with various situations?
My opinion on self-diagnosing is favorable. It is useful, and one can find ways to verify the diagnosis via testing. It can vary depending on the situation. Sometimes, there are different opinions on a diagnosis from one doctor to another and from the patient and the doctor, so, of course, it will vary for each case.
Self-diagnosis is important, especially in lifestyle changes and nutrition, food sensitivities, and other areas where a doctor may not provide the solution or even understand it. I am sure there are many situations where a person may self-diagnose.
I often engage in is self-diagnosis, and I also communicate with my doctor about it. She has become accustomed to this. I have had doctors who were not comfortable discussing my self-diagnosis efforts, and I no longer include them on my medical team. I went through five doctors in one year in the past. I have high standards for my doctors, and my health has improved because of this.
I can offer the tip to be vigilant. Do your research, find others with your condition, find organizations that support people with your condition. Find doctors who specialize in treating your condition and write books about their findings. Leave no stone unturned. I have neurological symptoms, but digestive issues can play a role in that, so keep an open mind about treating other parts of the body that may not initially seem to be related. Also, food sensitivities can play a role; toxins in the environment can play a role. Something as simple as changing laundry detergent might impact one's health in a big way.
@BlindGrapefruit
I agree. I was having headaches for years. Then I finally realized they started soon after I put my deodorant on in the morning. It turns out the fragrance was causing them (probably related to sinuses).
So like you said... I just switched to unscented... and the headaches I had for years finally stopped. But doctors never suggested that.
@7motivation
Wow, it is amazing how something like that can make such a difference! I congratulate you on finding that trigger!
I guess I can answer my own questions!
1. What's your opinion on self-diagnosing? Does it vary on the situation?
I definitely learned the stigmatized position and had to unlearn it and hear out the person and try to understand first. There are some situations where I would probably not fully understand. Overall though, I do think it's quite useful, especially in tandem with a doctor who is supportive.
2. Is there another situation where someone may self-diagnose?
3. Have you ever engaged in self-diagnosis?
Mentioned above about attacks, I've also been allowed to diagnose infections I've experienced before and start antibiotics (I've also seen a doctors years ago for one of those told her what I had and was chastized with tell me your symptoms, not your assumed diagnosis, tried to avoid that doctor after that, she didn't care what worked well in the past for me). I've had bigger things though, I was actually given an incorrect assumed non-official terminal diagnosis (more tests had to be done) by multiple doctors. With the test results I came up with a very rare (non-terminal) condtion that my doctors had not heard of before and then when I saw a specialist my self-diagnosis was confirmed. At this point I have also diagnosed a syndrome in connection with it, not sure that will ever be confrimed. My doctors are aware, I sent information but doctors don't really diagnose things they are not familiar with. It doesn't affect treatment but it does mean assuming some of my symptoms and abnormal tests are due to that and not something else totally undiagnosed, so that's a potential harm if I'm wrong - but it's not like I haven't tried to get those issues sorted prior to this.
4. Any tips for people dealing with the various situations?
Learn about things. Work with others, and try to get some medical professionals working with you. Don't believe everything you read. I prefer science based medicine so I focus on sources that are trustworthy based on that principle.
@AffyAvo It took some time for me to get a diagnosis of schizophrenia despite having symptoms since early childhood. It was mostly because I was scared and I started seeking help late and was not well informed about my own symptoms. Even when I did start seeking help, diagnosis took alot of time. My doctor wanted to run tests and see how frequently I was experiencing symptoms. Although I already knew how frequent symptoms were. That added some more delay in starting treatment
I also changed doctors which added to the delay in starting treatment
@hillsideblues Those delays can be frustrating! I do think many avoiding going to or bringing up symptoms with their doctor because they are scared. I hope things feel less scary now that you've done that step!
@AffyAvo The latest experience with self diagnoses is when I told my primary doctor over a year ago that I thought I had Chronic Fatigue Syndrome. She didn't run any tests, didn't say anything or even acknowledge what I had said. Each appointment I would mention the symptoms I had and that I thought I may have Chronic Fatigue.
About a year later, I was complaining about always being tired and sleeping a lot and her reply was "It's because you have Chronic Fatigue." That was my diagnoses.
I do not have much faith in doctors and I am not afraid to shop around trying different doctors. When I find a good one like my pain management doctor, I keep them close.
