Autistic patients need healthcare professionals to know that their discomfort can feel worse than pain, and that pain scales do not work for us due to our interoception differences.
Your articles are always so fascinating and full of knowledge. Have you written a book about this stuff? I feel like it'd be a bestseller. For real. I'm not sure what kind of resources there are out there in this realm, but just a thought. Thank you for taking the time to share all this.
Thanks, that’s so lovely of you to say! I have it in mind to write a book but it’s a literal nonstarter of a project. It’s so hard writing this trauma all down whilst living and reliving it, as I’m sure all of us are finding 😭
Wow! , great piece of writing. My brain fog is thick today but I couldn't stop reading. I feel so much of this! Not knowing what your body is feeling, or how to describe it. Being medically gaslit so so much. Not having pain believed so much it is dangerous to life. Trying to just survive perimenopause! I really feel your experience x
Thank you for this. I did not go through as intense of a hell as you describe here, but it was definitely hell. At the time, I did not know I was Autistic - I was diagnosed post-menopause. Reading about your experience has helped me make sense of my perimenopause and menopause experience, and I am reframing my recollection with this newer understanding of how much menopause impacted how I experience being Autistic. Thank you for so fearlessly and eloquently sharing your story. Most notably, I appreciate your exploration of how differently we experience and interpret pain.
I’m delighted to hear your experience of the autistic menopausal transition wasn’t as dreadful as mine has been so far! It’s also reassuring to be reminded that, at some point, it will improve again although who knows to what extent on my part. It’s hard piecing this all together, we are lucky knowing that we aren’t alone 😊
I feel like I could have written parts of this, myself. I’ve always felt like physical pain was easier to endure than emotional pain.
I’ve four healthy children and have had two losses. Neither were ectopic pregnancies but both miscarriages were emotionally excruciating. I was a teenager when I lost my first pregnancy. Even though at that point I wasn’t ready to be a mother and was in a sense, relieved. The grief I experienced was unbearable and none of my peers understood so it was incredibly isolating. The second loss occurred early into my second trimester. This would have been our fourth child and I was over the moon with excitement and joy. I went in for a sonogram and I knew right away that something was wrong. I could hear the whooshing sound on the monitor but no heartbeat. The technician stopped talking and became very still. The expression on her face revealed that something was indeed wrong. Still, I asked if everything was okay. “I need to get the doctor. I’ll be right back.” My eyes began to sting. I bit the inside of my lip in attempt to fight back my tears and transfer the pain to a physical location. When the doctor came in and told me that my pregnancy was no longer viable, I began sobbing. I felt physically ill. She informed me that I would need a procedure to remove the fetus but would need to wait a few days while my body would think I was still pregnant but my mind would know the truth. It was agony. The emotional pain and trauma I endured was far worse than any of my childbirth experiences.
Oh Sam! I wish I knew how to answer this. My therapist told me that healing will occur but I may never fully get over it. I’m somewhat paraphrasing, but she told me there is beauty in the sorrow, the longing and in the overall journey. I’m still trying to find that beauty … or more accurately, I’m still trying to understand what that means. Sending you so much love.🩷
Sending love back to you. I too don’t know how to heal from it. I remember when I was at my darkest - post surgery and utterly bereft. I was fortunate to have a GP at the time who was incredibly empathetic because she too had gone through ectopic surgery. She referred me to counselling and that was helpful. The counsellor listened so gently and I expressed how others were hopeful I could just have another baby, she validated that that was my baby, and I hadn’t wanted to end the pregnancy.
Yesterday I was lucky to have an art therapy session with a wonderful local therapist. I’m not working on a piece that expresses all I’m still going through. I didn’t think it would be as therapeutic as it has been.
I’m hoping to continue working on it over the weekend and write a piece to go alongside it. I had it in my mind that I need to write a publish my hysterectomy article, but I’m coming up against internal barriers to that…
Hi Tirzah, I am so sorry - I have only just seen your comment now. That is so heartbreaking, what enormous losses you have endured! My sister was stillborn and my Mum had to give birth to her. It was her first pregnancy. My ectopic pregnancy was similar to your second loss. I was also told to wait for the doctor to confirm that the pregnancy was not viable. They admitted me, found me a bed and got me into theatre rapidly, before it ruptured. But then I still felt pregnant for a long time afterwards and was pleading with the nurses for drugs to stop me feeling pregnant. It was harrowing. How are we supposed to get over this stuff? Do we just assimilate it? It isn't something I feel willing to accept. It still feels cruel and unfair.
Your articles are always so fascinating and full of knowledge. Have you written a book about this stuff? I feel like it'd be a bestseller. For real. I'm not sure what kind of resources there are out there in this realm, but just a thought. Thank you for taking the time to share all this.
Thanks, that’s so lovely of you to say! I have it in mind to write a book but it’s a literal nonstarter of a project. It’s so hard writing this trauma all down whilst living and reliving it, as I’m sure all of us are finding 😭
Wow! , great piece of writing. My brain fog is thick today but I couldn't stop reading. I feel so much of this! Not knowing what your body is feeling, or how to describe it. Being medically gaslit so so much. Not having pain believed so much it is dangerous to life. Trying to just survive perimenopause! I really feel your experience x
Sorry, I only just spotted your comment now. I’m glad it’s validating your experience, but I’m sorry you’re going through all this too x
Thank you for this. I did not go through as intense of a hell as you describe here, but it was definitely hell. At the time, I did not know I was Autistic - I was diagnosed post-menopause. Reading about your experience has helped me make sense of my perimenopause and menopause experience, and I am reframing my recollection with this newer understanding of how much menopause impacted how I experience being Autistic. Thank you for so fearlessly and eloquently sharing your story. Most notably, I appreciate your exploration of how differently we experience and interpret pain.
I’m delighted to hear your experience of the autistic menopausal transition wasn’t as dreadful as mine has been so far! It’s also reassuring to be reminded that, at some point, it will improve again although who knows to what extent on my part. It’s hard piecing this all together, we are lucky knowing that we aren’t alone 😊
Sam, your knowledge, and how you articulate it is just spot on!
Thanks, Nicola! I am glad it resonated.
I feel like I could have written parts of this, myself. I’ve always felt like physical pain was easier to endure than emotional pain.
I’ve four healthy children and have had two losses. Neither were ectopic pregnancies but both miscarriages were emotionally excruciating. I was a teenager when I lost my first pregnancy. Even though at that point I wasn’t ready to be a mother and was in a sense, relieved. The grief I experienced was unbearable and none of my peers understood so it was incredibly isolating. The second loss occurred early into my second trimester. This would have been our fourth child and I was over the moon with excitement and joy. I went in for a sonogram and I knew right away that something was wrong. I could hear the whooshing sound on the monitor but no heartbeat. The technician stopped talking and became very still. The expression on her face revealed that something was indeed wrong. Still, I asked if everything was okay. “I need to get the doctor. I’ll be right back.” My eyes began to sting. I bit the inside of my lip in attempt to fight back my tears and transfer the pain to a physical location. When the doctor came in and told me that my pregnancy was no longer viable, I began sobbing. I felt physically ill. She informed me that I would need a procedure to remove the fetus but would need to wait a few days while my body would think I was still pregnant but my mind would know the truth. It was agony. The emotional pain and trauma I endured was far worse than any of my childbirth experiences.
Oh Sam! I wish I knew how to answer this. My therapist told me that healing will occur but I may never fully get over it. I’m somewhat paraphrasing, but she told me there is beauty in the sorrow, the longing and in the overall journey. I’m still trying to find that beauty … or more accurately, I’m still trying to understand what that means. Sending you so much love.🩷
Sending love back to you. I too don’t know how to heal from it. I remember when I was at my darkest - post surgery and utterly bereft. I was fortunate to have a GP at the time who was incredibly empathetic because she too had gone through ectopic surgery. She referred me to counselling and that was helpful. The counsellor listened so gently and I expressed how others were hopeful I could just have another baby, she validated that that was my baby, and I hadn’t wanted to end the pregnancy.
Yesterday I was lucky to have an art therapy session with a wonderful local therapist. I’m not working on a piece that expresses all I’m still going through. I didn’t think it would be as therapeutic as it has been.
I’m hoping to continue working on it over the weekend and write a piece to go alongside it. I had it in my mind that I need to write a publish my hysterectomy article, but I’m coming up against internal barriers to that…
Hi Tirzah, I am so sorry - I have only just seen your comment now. That is so heartbreaking, what enormous losses you have endured! My sister was stillborn and my Mum had to give birth to her. It was her first pregnancy. My ectopic pregnancy was similar to your second loss. I was also told to wait for the doctor to confirm that the pregnancy was not viable. They admitted me, found me a bed and got me into theatre rapidly, before it ruptured. But then I still felt pregnant for a long time afterwards and was pleading with the nurses for drugs to stop me feeling pregnant. It was harrowing. How are we supposed to get over this stuff? Do we just assimilate it? It isn't something I feel willing to accept. It still feels cruel and unfair.