Disease Begins Before Diagnosis | Brianne Benness | TEDxDeerfield

[stuffwelike]

Im pouring tears right now. Im so tired of hearing "well its just chronic pian."

[ry.butterfly]

"I felt like I was losing myself"
Scuse me while I go cry over how impactful this sentence was. I feel the exact same way

[Caleb-ilom]

Going on 7 years undiagnosed...one of the few videos on the internet to make me cry. I push too hard, all the time, and all I get are suggestions from people. It's the loneliest place in the world to be (on my experience anyway)

[max_x]

This has been my life for years, it's horrible how many of us there are just sitting in limbo not knowing what is wrong with us

[imapandaperson]

Thank you --- the medical gaslighting is so real, it can make you feel like you're nuts and it's somehow your fault you're going through this. The number of doctors that just can't be bothered, dismiss you, and act like you're wasting THEIR time...it's astounding. I wish doctors could just say "I'm sorry, I don't know what's wrong, but i'm going to help you find out."

What is so wrong with admitting you don't know? Your patient is already sick, why make them now feel sick and crazy just because you can't admit you don't know what's wrong?

[hayleeedwards]

What hurts me the most is I didn’t have a promising childhood, so by the time I hit my mid 20’s I was incredibly eager to become something & make myself proud. I was working my tooshie off & flying up the corporate ladder, so in love with my life. Then 1 morning I woke up to a sickness that took it all away in an instant & left me bedridden for years. 10 years later & I still can’t work. THATS what hurts me.

[les]

I am living what you’re talking about. After being in hospital for a week and having every test, they found nothing and told me it was in my head. Was sent to mental hospital where I got worse and down to 77 lbs. they told me I was refusing to eat and delusional. I had so much pain, dizziness and difficult breathing I couldn’t eat or stand up straight and I looked sick, but they wouldn’t believe me. I still have symptoms almost 3 years later but milder and I can eat and walk better. Still looking for diagnosis. It’s been a horrible nightmare and, yes, I still hear “it’s all in your head” from family and friends. I have no history of mental health issues, never been on psych meds, never even been in counseling. I had a perfectly normal productive life before I got sick. YES, I want to be believed!! The psychiatrists were mean, rolled their eyes at me, and acted like I was inconveniencing them because I couldn’t eat. I still have trauma over the way I was treated by the doctors.

[emjdigresmj]

By the time I got a diagnosis (years after the trigger!), I broke down in tears. My doctor was confused, and kept telling me 'it isn't that bad' ... I wasn't crying because it was bad news. I was crying because I finally had (the beginning of) an aswer.

[McHoneyBunnyLPs]

The problem starts when you don't have the energy to visiting docs anymore. I'm diagnosed with ME/CFS but still i hope it's something else. Im on the point where it's too exhausting to visit doctors. It's a 6 year diagnose journey and 4 of them not able to work (I'm 27 at the moment).

It's really hard. And if you look in the comments you find lots of people with this kind of fate. It's sick.

[zimbofox]

I got diagnosed with Ankylosing Spondylitis at 24 after nearly 10 years of chronic back pain. No one listened or believed me, and because of this I abused anti inflammatorys for a solid 10 years almost destroying my kidneys. If this sounds familiar please get help, keep pushing, never give up.

[emma]

It took me 15 years to receive a diagnosis for Ehlers-Danlos, this was perfectly articulated. Thank you ❤️

[stuffwelike]

Im so tired of "why don't you go to the doctor" I have several and its always the same.

[dotcassilles]

My health challenges started before puberty, got worse when puberty hit and I got my first diagnosis at the age of 21 after being unable to walk for 3 months due to a back injury... I'm now 41 years old and still struggling to find doctors and specialists who will listen and help me to get better. I am never without pain. I experience chronic pain all over my body, chronic fatigue syndrome and a rare type of bipolar disorder as a result of how doctors discounted my symptoms. I've been vomiting every day for almost 2 years and arguing with my doctor about going to the gastro doctor since the vomiting began.
On top of the way health professionals treat me I also have family who don't believe anything is wrong.
I'm just being dramatic, exaggerating my symptoms or being lazy according to my family.
Having a diagnosis doesn't change people's attitudes to you.
It's only recently that I have had anyone say "I believe you".
I truly believe that there are three life changing words that people need to say when you tell them about symptoms you are experiencing. Hearing "I believe you" was so life changing.
Most of the people who say "I love you" to me regularly don't realise that by not saying I believe you they just make it worse.
I hope everyone has one person to sat to them "I believe you" and then actually try to help.
Blessings from South Eastern Australia, Dot

[breannapiscitelli]

I would love to write to her about my story.

I am legit, crying watching this video. I’ve never felt so alone in my life before I got diagnosed.

I also went through years of suffering, and being told I was crazy. I was put on so many different medication’s, and no one took me serious until my health took a turn for the absolute worst.

It got so severe that right now the only thing that they can give me as a diagnosis besides all the other diagnoses I have is mixed connective tissue disease.

I have a whole list of other diagnoses that mostly have appeared in the past two years but for years, I wouldn’t even let myself admit. There was anything wrong, and I pushed my body physically and mentally to the absolute limit.

This was so validating. I still feel like no one knows how I feel but at the same time I think that’s more because when I was not diagnosed, everyone treated me like I was absolutely crazy.

When I finally started getting very sick and I started getting a lot of very bizarre test results back. Everybody started acting completely different around me but now it’s more so of a depressing feeling.

My entire life I’ve just wanted to be happy and live a normal life and I feel like it’s been a struggle since day one.

I’m still in the process of finally figuring out everything that’s going on, but it feels like the list it’s just never ending.

I was diagnosed with Hashimoto’s when I was 13 and I’ve struggled with learning disabilities, as well as ADHD, and possible autism since a child.

I’ve had issues with chronic gastrointestinal issues. I literally don’t even know how to describe it because I’ve been through a lot of stuff with the Gastro, and it was very traumatizing. I got through colitis Difícil and it took me over eight months.

I had a colonoscopy they found a polyp in my colon. And basically they tested me for Crohn’s and ulcerative colitis but both came back negative so they completely disregarded me and told me they would see me again in five years.

I just had a rheumatologist appointment yesterday and my blood test came back positive for Crohn’s disease.

I get tests like this constantly and it’s so frustrating having to go through all of these tests that feel like they’re all contradicting each other.

Like there was another time where I went to the hospital because I had severe abdominal pain while I had CDF and I thought I had a bowel obstruction and it turned out. I had a ton of cysts on my ovaries.

I genuinely think I actually have a genetic disorder called EDS. I think I possibly have the vascular kind but I don’t want to even bring it up unless it’s some thing that is for sure. We haven’t gotten to genetic testing yet but it was brought up because my family has a history of EDS

I guess the most frustrating part is I was told my entire life that if I try hard enough, I would be happy and there was a point where I did and then after a while I gave up and then I’ve been trying again, but it seems to always make things a lot harder.

It’s absolutely crazy how we are basically talk to ignore clear signs of our bodies and distress from a young age. That’s really what I blame all of my severe health issues from at this point.

I’ve never really been able to identify why I’m in pain or what is in pain just that it hurts.

I think the thing that has been very hard for me to move past is what you said. The fact that there is no cure, and that it is a toll on upkeep of medication, and just life management.

I am about to be 29 years old, and I have actually been struggling, for I would say no about seven years, but I’m finally actually qualifying to get the help that I need because of the medical part.

I don’t even think I’m going to have to get a lawyer, but I never wanted it to come to this in the first place. I never wanted to have to struggle so hard just to live. I want to be able to do things I did when I was younger that were fun. I want to be able to ride roller coasters and Run and pick up my daughter among other things like leaving the house. All of these things are incredibly hard when you have this many issues. And when you don’t have a diagnosis, everyone just thinks you’re crazy and they try to force you to go into the situation’s with no help.

I genuinely feel for anybody. Who’s had to feel like that. I genuinely also believe that this is why so many people have anxiety. I obviously am diagnosed with anxiety and I am on a lot of medication to try to treat it because of my health problems. But I know I’m not the only one with that.

My aunt is very honest about her health problems and it’s the only reason I’ve even found out we’ve had genetic issues on that side, at least.

My dad refuses to talk about anything and basically refuses to go to a doctor. His dad passed at 55 from complications, leading from diabetes, being overweight, smoking, and lung cancer. He had an array of health problems that were diagnosed, and he had another array of health problems that were most likely undiagnosed.

[spijker]

Brianne, you're doing such good things in raising awareness for the ones who suffer from a chronic illness. One day I will translate your TEDx Talk in Dutch so as many peopleas possible in my country can hear/read your sensible words.

[allytee]

Thank you for sharing this video. It made me cry so many times, just having someone who gets it is so validating and powerful. The past two years I have had a chronic illness. It’s changed my life. Many doctors don’t understand this illness or know anything about it, but there are thousands of others suffering with it in silence and getting misdiagnosed.
It’s called chronic UTI. It is so painful and causes bladder wall damage, kidney damage and daily pain.

[mediocreatbest]

I feel so seen. I was diagnosed with thyroid cancer (the "good cancer" if you will), and I also identified deeply to that period of uncertainty before the diagnosis. After the diagnosis, I finally felt validated and could attach my suffering to a label. It was no longer an abstract worry, it was "thyroid cancer".

And even right after diagnosis when I was showered with attention and people around me believe my story, I still felt guilty because my worry & symtoms was still there even though my illness was very tame. I didn't think I deserved to complain. It felt like I was overreacting and playing a victim as "the cancer patient", when I knew other patients suffered much more than me. And even long after diagnosis, even when my type of cancer has a clear treatment plan, I'm still caught off guard with the symptoms that my body experiences. I'm expecting an "easy" disease, but instead I live in chronic condition. I thought I only need to take daily medicine, but I didn't expect that I still have to handle some symptoms daily. I still have to have a lot of doctor's appointments. And my routine scan that I take every 6 months still cause me great despair (mainly because of the awful side effect of the pre-scan preparation, and how nobody near me truly understands how massive this affects me). I know what to expect, and I still struggle to piece together my own life. I know that it would end someday (I hope) because I don't have the agressive cancer. But the day-to-day moment of excruciating pain and self-isolation feels like eternity, and I find it hard to believe that it will get better. I feel like I need to push every atoms of my body just to reach tomorrow. I know it'll get better, but nobody seems unable to provide me a clear answer when I ask them "when?".

Anyway, my heart goes to everyone who is still trying to get their diagnosis to this day. And also to those who already receive a diagnosis but are still unsure about the future. I see you. I hope it'll be better. I hope you'll find your answer.

And thank you so much for this talk, thank you for representing our voices.

[scifirocks]

I have a currently undiagnosed neurological condition which means I can't work and have also had a history of severe depression and Ehlers-Danlos Syndrome. There's also little financial support. One of the things that hurts the most is the lack of understanding, sympathy or empathy from family.
My sister had a small malignant melanoma which was found very early, treated surgically and eradicated within a few months of even being noticed. Our family rallied around her and gave her lots of attention while ignoring me. She also had her mortgage paid off due to an insurance payout.
I've often found wishing I could swap these chronic illnesses for an easily treatable cancer like hers, which makes me feel guilty.

[downshiftingpath]

It took 2 yrs in and out of hospital to be diagnosed with a very rare neurological condition. Thank you for talking about this.🦋

[friendrus]

It took me 24 years to find out I have Stiff Person Syndrome. I was careful not to complain too much but was still considered anxious. Who wouldn't be anxious knowing their body is failing and they don't know why?