Childhood Chronic pain ignored: navigating chronic illness in toxic families?

[Strangelongtrip]

I’m finally getting help for my physical ailments after years of thinking they were anxiety and depression related. I’m 21 now. When I was 8 years old I started to have horrific, tingling, burning sensitive pain in my hands. I would start sobbing in class and get sent him because I couldn’t hold a pencil. My mom took me to the doctor, they ran tests and someone must have mentioned I was anxious because my doctor wrote it off as anxiety. So everytime I brought up my pain my mom would say it’s just anxiety, breathe and do this and that and it’ll feel better. It didn’t. I went to the doctors a few times for it but everytime, it’s anxiety or depression, it’s anxiety or depression. For 13 f*cking years, even as it spread to my whole body. It’s nearly debilitating sometimes. I also have cognitive and memory issues, which the PTSD didn’t help.

I am always in pain. Because of the constant denial whenever I see doctors I almost have panic attacks that they won’t believe me. I was terrified my parents would say it was all in my head, again, again. And in February I started almost passing out which is probably POTS which everyone wrote off as anxiety until I show them that when I stand up my heart rate jumps anywhere from 40-60 bpm, and I feel weak and dizzy. Then he told me he agreed with me getting help.

My whole family talks trash about my grandmother, who is also chronically ill. They just mock her relentlessly. When I mentioned my pain and dizziness etc to my brother he told me “wow you sound like Granny” and rolled his eyes. He said I’m kidding but it’s this all the time. All the time. When I showed my dad he’s like “you’re just like Granny I got the good genes” and my mom thinks she’s superior for not taking f*cking vitamins.

I usually don’t let it bother me because I know most of my family sucks and has their shit that they aren’t dealing with and at least I have my granddad who supports me and listens to me about my health. He’s always pushing for me to get help.

I feel like this isn’t even necessarily toxic families. Our whole culture in the US has a stigma against disabled/chronically ill people because of capitalism and the Puritan work ethic, etc.

On top of it my therapist believes I can heal myself with my mind and one day I won’t have pain. He literally sent me a video about using positive affirmations and deep meditation to change your GENES. Like You Are the Placebo stuff. It may work for some people but I don’t even know why I have my pain. I didn’t go in this week because I was busy so I cancelled but I’m also so sick of being invalidated by him.

I don’t know if being denied validation and space for pain is a trauma, but it’s certainly a stressor for me. It makes my PTSD symptoms worse too, and I have panic attacks thinking about it. The pain increases my mental health symptoms, then my mental health symptoms increase my pain. My pain has already cost me two jobs,I was in too much physical pain to do it, and I’ve only had maybe four jobs and internships in my life. I’m 50/50 lol.

And then I think about if I get worse and have to be dependent on my family for the rest of my life, or live here any longer than necessary to take care of my health. I’m already having trouble driving but I push on so I don’t have to depend on them. Or even like not being able to work enough to support myself. I barely have enough energy for school and a 10 hour a week job, but I guess that in it itself is 55 hours a week so I should stop doubting myself. Some nights just hearing my dad talk makes me hyper vigilant, but I’ve been way better at talking myself down from these episodes.


This was a long rant so thank you for reading. I’d love it if we could share stories about living with chronic illness and PTSD. Maybe start a thread for it somewhere or maybe there already is one that I haven’t seen!!

 

[Abstract]

If you have POTS type symptoms then check for hypermobility as well in case noone has checked that.

I dissociated myself from my body and physical symptoms a lot for most of my life and I also incorrectly put physical issues down to physcological sources.

It was only when I hit my late 40's when I started being more connected mentally and physically. It was weird to start accepting all the stuff that had been undealt with. I do have 3 chronic pain conditions so find its a process. Have other chronic illness that adds to that but it could be worse. Most helpful has been acceptance combined with lots of preventive care and proactivity. And most of all awarenesss. also find it very helpful to truly understand the condition and the theory around it,

Invalidation and medical neglect can be extremely effecting I find,... So sorry that has happened for you.

 

[lynn T.]

I’m finally getting help for my physical ailments after years of thinking they were anxiety and depression related. I’m 21 now. When I was 8 years old I started to have horrific, tingling, burning sensitive pain in my hands. I would start sobbing in class and get sent him because I couldn’t hold a pencil. My mom took me to the doctor, they ran tests and someone must have mentioned I was anxious because my doctor wrote it off as anxiety. So everytime I brought up my pain my mom would say it’s just anxiety, breathe and do this and that and it’ll feel better. It didn’t. I went to the doctors a few times for it but everytime, it’s anxiety or depression, it’s anxiety or depression. For 13 f*cking years, even as it spread to my whole body. It’s nearly debilitating sometimes. I also have cognitive and memory issues, which the PTSD didn’t help.

I am always in pain. Because of the constant denial whenever I see doctors I almost have panic attacks that they won’t believe me. I was terrified my parents would say it was all in my head, again, again. And in February I started almost passing out which is probably POTS which everyone wrote off as anxiety until I show them that when I stand up my heart rate jumps anywhere from 40-60 bpm, and I feel weak and dizzy. Then he told me he agreed with me getting help.

My whole family talks trash about my grandmother, who is also chronically ill. They just mock her relentlessly. When I mentioned my pain and dizziness etc to my brother he told me “wow you sound like Granny” and rolled his eyes. He said I’m kidding but it’s this all the time. All the time. When I showed my dad he’s like “you’re just like Granny I got the good genes” and my mom thinks she’s superior for not taking f*cking vitamins.

I usually don’t let it bother me because I know most of my family sucks and has their shit that they aren’t dealing with and at least I have my granddad who supports me and listens to me about my health. He’s always pushing for me to get help.

I feel like this isn’t even necessarily toxic families. Our whole culture in the US has a stigma against disabled/chronically ill people because of capitalism and the Puritan work ethic, etc.

On top of it my therapist believes I can heal myself with my mind and one day I won’t have pain. He literally sent me a video about using positive affirmations and deep meditation to change your GENES. Like You Are the Placebo stuff. It may work for some people but I don’t even know why I have my pain. I didn’t go in this week because I was busy so I cancelled but I’m also so sick of being invalidated by him.

I don’t know if being denied validation and space for pain is a trauma, but it’s certainly a stressor for me. It makes my PTSD symptoms worse too, and I have panic attacks thinking about it. The pain increases my mental health symptoms, then my mental health symptoms increase my pain. My pain has already cost me two jobs,I was in too much physical pain to do it, and I’ve only had maybe four jobs and internships in my life. I’m 50/50 lol.

And then I think about if I get worse and have to be dependent on my family for the rest of my life, or live here any longer than necessary to take care of my health. I’m already having trouble driving but I push on so I don’t have to depend on them. Or even like not being able to work enough to support myself. I barely have enough energy for school and a 10 hour a week job, but I guess that in it itself is 55 hours a week so I should stop doubting myself. Some nights just hearing my dad talk makes me hyper vigilant, but I’ve been way better at talking myself down from these episodes.


This was a long rant so thank you for reading. I’d love it if we could share stories about living with chronic illness and PTSD. Maybe start a thread for it somewhere or maybe there already is one that I haven’t seen!!

I can relate as a child being invalidated and it usually came from too much sarcasm in someone. I didn't understand as a child that sarcasm and put-downs can come from a place of insecurity and low self-esteem in those family members who need to feel better about themselves so they put others down and use criticism and put-downs as just a means of bolstering their own weak ego. So that kind of sick relating really has zero to do with you - it has more to do with their weaknesses and from what you say, it seems they find fun in inappropriate comments about you or grandma. I used to escape people as a child who talked with sarcasm, etc. by leaving the room, being in nature, riding my bike or going down to a pal's house where their family seemed normal and had compassion. It sounds great all the work you're doing and mostly, your attitude of resistance of being squashed by their poor behavior. Lots of times, people like this expect their comments will force you to get defensive and scream back. Funny, their kicks come from verbal volleyball. Maybe you can just walk off without so much of a thought of a comeback and then, they get zero reinforcement for their behavior. Sad, but toxic people are in our lives and keep alive pain from traumas and past abuses. You have every right to distance yourself.

 

[Strangelongtrip]

@Abstract the only hypermobile part about me are my ankles and SI joints/hips, I’ve thought maybe I have it though,although my grandma who’s sick I wouldn’t be surprised if she had EDS because she’s always dislocating. I have subluxation, which they pop right back in, especially in my shoulders. It’s been getting better since I’ve been strength training though!!

I feel acceptance is the big part, and I feel like my therapist is making it harder on me by saying it’s possible to heal. I’ve had pain in my hips and SI joint for years and fighting it and going why me I want to heal only made the pain and depression worse.

I wish you the best with your conditions, and that they are manageable most times!

Hi @lynn T. yes, that’s so much the source is their own insecurity and need to be “better”. I used to feed into it but now I just don’t respond, at all. I’m a blank slate. And it shuts it down! But sometimes the thoughts still linger on afterwards, and affect me. Gotta keep realizing where they come from.

 

[lynn T.]

That blank state could be reinterpreted as a healthy place to just rest, save up your energies for what you need for yourself to survive. Amazing stuff can happen when we go into blank states. We can be honest and ask ourselves what role did we really play in some bad interaction with someone. That has required that I be truthful with myself and accept blame when I realize I am at blame OR it might result in my certainty of an opinion that some folks are really as nasty or sarcastic or disordered as I am feeling they are. Usually, if I feel somebody is being nasty, it gets validated in some way over time. Either someone else says the same thing about them as I was thinking or I just see that they have a habit of acting the same around everyone. But, it doesn't require any group concensus to change my opinion if I personally feel they're being a jerk, etc.

 

[ImjustasnailSNAIL]

I recently got a POTS diagnosis after visiting the Mayo Clinic in Rochester, MN. They run that place the way all hospitals should run, imho. They have financial aid and you can get assistance with travel and a place to stay while you get seen to. My mother went with me and it totally changed her perspective on my illness. To actually see what I had to go through and more importantly, what I was willing to go through to find an answer, and maybe some relief.
As a kid, everyone (including me) thought I was a hypochondriac. When I’d sprain my ankle or dislocate a finger or get a migraine, everyone assumed I was being dramatic. It’s infuriating and it can make you feel ashamed to tell anyone about your symptoms. It became so normal to ignore my symptoms that for years I said nothing about fainting when I got out of bed, blood in my stool, or nerve pain. Because I was mentally ill, my physical health problems were dismissed as psychosomatic. PE was the worst. I always did my best, but I was frequently lectured and yelled at and told I was “out of shape,” by soccer and basketball coaches when I came in last every time we ran laps. It always took me at least one full class period to return to normal heart rate and breathing after running track. My parents always made me play a sport. It always hurt, but I internalized the idea that pain was a normal and acceptable part of everyday life and that I shouldn’t try to fix it.
Even though I know now that I have a chronic illness, I still push myself past my limits bc it’s what was expected of me for so long.
That’s trauma. When something bad happens that teaches you behaviors that help you survive the trauma, but that are maladaptive in the long term.

 

[Strangelongtrip]

I internalized the idea that pain was a normal and acceptable part of everyday life and that I shouldn’t try to fix it.

THIS THIS THIS!!!! The sad thing is one time I said that to my abusive ex and he said you shouldn't have to be in pain all the time it's like they gave up looking for answers. Like this man who tortured me emotionally for months understood this and my family didn't.

SO many years of my symptoms being tossed up to anxiety. PE sucked for me too, when I was 5 I remember sleeping through it and pretending to not be woken up. Holding pens in class killed me the most though, which I'm finding out is common with children with EDS. I've sprained both my ankles about 3 times each.

My mom wants me to go to Mayo Clinic now. It took me being able to be in recovery for my mental health to be able to be taken seriously. It's taught me to be incredibly persistent though which has been useful in my life. There's an EDS geneticist and specialist about an hour from me fortunately. I have to fill out like 30 pages of info and then it's a 30 month wait but I hear people get in sooner.