u/tinytillymouse

I’ve been having problems with swallowing, breathing and talking for around a year and a half and people kept telling me I was just anxious when I went to A&E and now I’ve been told today I have antibodies and I have myasthenia gravis. I was admitted to hospital last year because I lost so much weight from not being able to swallow and they discharged me saying they didn’t want to medicalise a problem that isn’t medical and that oesophageal weakness doesn’t mean anything. I’m so angry.

I have several symptoms that could point towards autoimmune disease - trouble swallowing with proven oesophageal weakness, more generalised muscle weakness and pain, joint pain, joint rashes, mouth ulcers, migraines, sun sensitivity, possible gastroparesis, etc.

My Mum has Sjögren's and grandmother has autoimmune arthritis.

I think I have good reason to investigate with rheum but would like recommendations for PRIVATE rheumatologists in the UK who never suggested it could be health anxiety while you were trying to figure out what was wrong.

I would be so grateful, please and thank you.

I have several symptoms that could point towards autoimmune disease - trouble swallowing with proven oesophageal weakness, more generalised muscle weakness and pain, joint pain, joint rashes, mouth ulcers, migraines, sun sensitivity, possible gastroparesis, etc.

My Mum has Sjögren's and grandmother has autoimmune arthritis.

I think I have good reason to investigate with rheum but would like recommendations for PRIVATE rheumatologists in the UK who never suggested it could be health anxiety while you were trying to figure out what was wrong.

I would be so grateful, please and thank you.

This is a long and ridiculous post to put on Reddit but I just have to. I'm sorry. I'm furious.

I submitted a post here yesterday on my experience of medical gaslighting in an appointment last week, and how I responded to it. Specifically, it was an experience that is all too common for us as a patient population: medical misogyny. https://www.reddit.com/r/endometriosis/comments/1spptmd/endo_is_my_new_magic_weapon_medical_misogyny/

After a couple of the responses I received in the comments, I wanted to dive into something a little deeper: the emotions that are culturally allowed if you are a woman.

This cannot be excluded from discussions about medical misogyny if we want things to change, because it's part and parcel of their control of us; of the narrative of what is happening to us and our health.

An example of this perception shift between men and women happened earlier this year in my house. We were watching The Traitors, and one of the contestants (a woman) made a speech, forcefully putting her point across. When she finished speaking, my Dad said "That was so aggressive" and pulled a face. Me and my Mum looked at each other with confusion. We both thought she was just being assertive.

Studies have shown that when women display assertiveness, it is coded as aggressive, overly-emotional, hysterical, domineering, bitchy. When men display assertiveness, it is perceived as decisive, forceful, ambitious, leader-like. https://pmc.ncbi.nlm.nih.gov/articles/PMC6997833/ This study makes this important point: "assertive is defined as showing confidence and standing up for one’s personal rights in a direct and honest way. Synonyms include self-confident, positive, self-assured, firm, and determined. Who would not like to have a reputation of being assertive and self-confident?" In our culture, this is a right only enjoyed by men.

One user wrote to me: "i was not as eloquent as you however... I get so triggered and just start chewing them out Told this man "How dare you? There is something physically wrong with my body I refuse to be invalidated about this and if you can't do anything then please let me know and I will go elsewhere. Otherwise, understand that I am telling you my symptoms because it is effecting my quality of life and you should be looking into what is causing it. This is NOT an emotional issue and I won't be gaslit into thinking it is" … me getting pissed and crying while chewing them out defs does not help my case"

I get the point that while we claim we aren't suffering from anxiety and display emotions like anger and crying, it is used to strengthen their case, and undermine ours. But their intolerance of our normal, human response to danger is NOT OUR PROBLEM. This feeling that we're doing the wrong thing by crying or becoming furious is a direct result of systemic manipulation and messaging that we are weaker for doing so. It is designed to keep us quiet, to keep us in our place. Our emotional competency and strength is something they could only wish to possess. Some of us dealing with 8-10/10 pain daily, relentlessly, for decades. I feel a bit silly referencing it but look at this video, how poorly they are able to cope with typical period pain: https://www.youtube.com/watch?v=s9cr8-LyNuE

Now, if we are to understand one function of emotion as a form of information, then what is our anger telling us in these appointments when we are asked, "Are you sure that your pain isn't because you're worrying far too much about your health?" Of course, it is telling us lots of things. It is telling us that we are under threat. That there is an indicator that we are not going to get our needs met. That we have experienced this before and it has led to bad things happening, to pain continuing, to dismissal, to being removed from waiting lists that stand between us and more months or years of suffering.

If we listen to where this emotion leads us, we might start to shout, or stand our ground, or shut down, or cry. We might also stay calm, and eloquently express ourselves. But that calm response is not NATURAL. It's HARD. It takes practice. And I don't know about you, but every single time a doctor questions my experience, it catches me off guard, even though it's all that I'm expecting when I'm waiting for my appointment, because it's so common.

Another commenter said to me: "It’s so sad to hear so many of us have had the same experiences, I’m so glad you told him back, I need to get better at that."

To speak eloquently in the face of this goes against the science of how our brains work. As a simplification of many processes - in neuroscience, we have learned that when under threat, our amygdala hijacks our prefrontal cortex - the brain’s control system. When something feels threatening or overwhelming, the amygdala can trigger a fight-or-flight response very quickly, which floods the body with stress hormones and prepares it to act. During that moment, the prefrontal cortex, which helps with reasoning, self-control, and planning, becomes less effective, so clear thinking is harder. In other words, as soon as a doctor questions our pain and insinuates our symptoms are due to anxiety [threat] our amygdala goes online and takes over emotional control. Therefore, patience and eloquence go out the window, and out comes anger, assertiveness, fear, tears, total shutdown, etc. This is a NORMAL, EXPECTED response to real threat. We are trying to protect ourselves.

Add the cultural expectations of women's behaviour on top, and it's checkmate for the doctor almost every time. We always feel like we've lost because of deeply held cultural beliefs. To require of us that we MUST keep our reaction under tight control to be listened to makes it even harder for us to rise up and push against this. Society would not expect the same of them. Men do not expect the same of themselves. Remember, men who display the same level of assertiveness as women are seen as confident, self-assured and dominant. We are seen as over-emotional, bitchy or aggressive, and don't we know it? It's drilled into us since day one that we are to be polite. We live within different boundaries.

I want to extend this to any of you who read my post and thought that you don't deal with this as well as I do. I want you to SMASH THOSE BOUNDARIES. I want you to shatter them. Please don't tell yourself that you aren't eloquent enough, that you lose control and that this is bad. Let RIP. See it as an act of defiance. Feel pride in the fact that they don't agree that your assertiveness is welcome. Your assertiveness is an imperative. Cry. Demand. Don't let them use this against you. Remember what they're doing - they are telling you that your pain is in your head and demanding that you feel nothing in the face of this accusation, while a disease slowly eats away the lining of your internal organs. You should be furious. To show your anger is a political act, and a necessary act.

Went to GP this week because since my endo surgery has decreased my daily pain levels, my horrific joint pain that I’ve had since I was a child has become more apparent. It was just in the background before…

Went and listed family history of autoimmune illness, comorbidity of autoimmune issues with endo, joint rashes and pain, GI issues including weak oesophagus and suspected gastroparesis, amongst other symptoms.

I got the usual health anxiety spiel from this guy which started with “I wouldn’t be a good doctor if I didn’t ask you this…” which gave me even bigger ick than usual cause it was phrased like it was an act of caring.

I stayed calm and told him that it was people asking me that question that delayed my diagnosis of endo to 15 years and that it was only discovered because I pushed for surgery. I also said it was the same question that prevented me from being diagnosed with a severe bowel condition for 26 years. I said to him that I was at the appointment because my symptoms are real and I want to know why I was hospitalised unable to swallow last year. He apologised to me, twice. When I mentioned endo his eyebrows raised and he sat back with shock. At least I get an apology now.

When will it end.