I provide therapeutic support for people living with chronic health conditions so you can live life to the fullest.
I not only provide this support, I'm a chronic illness patient too. After being diagnosed with multiple chronic health conditions, I realized there wasn't enough support out there for the emotional and mental toll chronic illness takes on us. So I started my own practice and became known as 'The Chronic Illness Therapist'.
In therapy and in my non therapeutic videos and educational materials, we will address the cognitive, emotional, physical, social and spiritual aspects of chronic illness. Through a self- care framework, I offer support through a focus on communication and strengths based practices. I promote clients taking an active role in their own pain and treatment.
Ihave endured this for yrs. It is EXTREMELY frustrating unhelpful, and downright insulting. EVERYONE KNOWS MORE How to live w/ what I endure, than I do!!!!! I decide more and more to condense my circle of "friends". I have enough STRESS w/o that. Unfortunate, but when people are unteachable for yrs. , what is left to do???
Anger at people in my life who think things might not be as bad as you are describing…as if I think it’s so much fun to feel like a truck ran over me daily. As my husband once said to me..”the pain can’t be that bad…” and me screaming at the top of my lungs..”god I wish I was lying”. I had to force him to goto the Dr with me and sit in the room and actually listen to the specialist.
💯 A person breaks their arm, oh everyone sympathizes… have Chronic Intractable Pain.. they run for this hills 💔😭 Thanks for explaining & understanding. I’ve lost everything I loved to do, things I need to do. Ppl just can’t comprehend pain 24/7.
i think it's even harder because i dont have energy, so the little i have is wasted on loops of grief, making it almost impossible to take steps to restructure my life. idk maybe time will change a thing or two and i'll heal
Hi AP! We met at the lofts a few years back; I have lupus and a coworker of mine just got diagnosed with LD. I shared this video with him. We spoke yesterday and he apologized for not having understood fatigue before... it is not the same as a sleepless night. I told him he will get through this, but it is difficult adjusting that first while. What is the best way I can support him without sounding like "been there?" I want to avoid that.
I believe my age and my weight are why I get dismissed as much as I do. I’m a 23 year old woman and I’m only overweight bc I’m so debilitated that I cannot do anything because the doctors won’t listen
The worse for me is the "if you wanted to you would" attitude, nothing stresses me out like having to constantly explain and argue with people over my capabilities, like you can just turn off your illness to suit their agenda. I think that's how I ended up with like one friend lol
Hi Doc, I just found your channel (thank God) and just want to thank you for your dedication to trauma and the topics you discuss. You rock and I cannot thank you enough. You are spot on. I have more to say but I'll leave it there for now! God bless you 🙏
You're so right but you missed when people say "you should volunteer more so that you don't think too much about your pain" and also "you are paying for sins in your past"
@@meidson12 i'm glad it resonates with you. i find it helpful because it allows you to release control without requiring yourself to "be ok" with it; you're just acknowledging that it *is* and that it it out of your control. so you save your energy for better things other than resistance <3
You just get fed up with trying to explain why you just cannot go for a walk, or really do anything despite all the years of trying and always suffering after effects if you do try.
Some people cope a lot better than others with the idea they will never be their old selves again. I’ve talked to paraplegics who have a great attitude and then there’s me with simple orthopedic issues who can’t cope at all with the idea I’ve only been running at 40% strength for about 4 years now. I don’t think I will never “accept” that I’ll never be better. My goal when I wake up every day is to feel a little better than I felt the day before. Every year it’s to feel a little better on an average day than an average day last year. To make slow, incremental progress toward recovery and maybe, with enough time and hard work, one day I’ll wake up and feel 75% like my old self again and it will all have been worth it because I can do at least some of my old activities again. I understand this isn’t possible for some people with intractable and degenerative illnesses, but it can help for people with more standard orthopedic problems as medicine makes progress year over year. And this is why I feel like something like Acceptance and Commitment Therapy may be better than CBT for some people like myself. My understanding of ACT is a daily inner conversation with yourself that says “okay, this sucks for right now, but through my determination it is not permanent, and while I may never be 100% of my old self again, I can get a lot closer than I am right now”
Medical gaslighting has reached epidemic levels. I have a theory and I truly believe this is due to a change in the curriculum in med schools as an overreaction to the opioid epidemic. They must demonize opioids and render them inaccessible. One method of doing that is an overemphasis on the mental aspect of chronic pain. Young med students are reading books that tell them all pain is in the brain, which of course it is, but they go overboard in saying you can "control" it by essentially just "thinking positive." I have had physical therapists tell me "after 12 weeks, your injury has healed and your pain alarm is stuck on overdrive. Everything after that is merely fear avoidance." It's mind blowing that they believe this, as though chronic, degenerative pathologies like arthritis, tendinosis, osteoporosis, etc don't present permanent tissue changes that are responsible for relentless, long term pain. Medical gaslighting also has to do with doctor ego. It's difficult for someone with a God complex to say "I don't know", and thus it's much easier to place the onus to "figure it out" back on the patient. If you fail, you just didn't think positive enough. Medical gaslighting presents different challenges for different segments of the population. As a man I understand this severely affects women. It affects men in other ways - being told to "man up" is very common, and sometimes the sight of a man wailing in pain seems to viscerally disgust medical professionals. And if they see you are active in the PDMP as having ever taken a controlled substance, they instantly lose all respect for you as a human.
You and your videos are real treasure for people with chronic illness! Thank a lot! I've been living with long COVID in-between mild-severe form for 3 years. My psychotherapist did not have such training as you had, she helps me, but it's still not so efficient as you recommendations. All the best to you ❤️
Yes yes and yes! Very familiar with these different stages. Thanks for presenting them so clearly. What I find interesting, is every time I think I have integrated the changes of having a chronic illness, my illness switches and I have to go through the cycle again! 🤪 After 30 years I keep on thinking I will have to stop going through all these stages but it seems to come hand-in-hand with being chronically ill.
Yes, you got it, the part I needed to hear was regarding the limits that I've already expressed in every way. But my conditions, my reality is not considered in any way, and it's messed up because they will offer to do something considered normal or nice, which is twisted, when you've expressed being drained already.. or they are bored and demand attention completely detached from your needing self care and aren't even able to function properly, you need rest.
Thank you very much for this info! I agree with you. This is exactly what I needed to hear from a professional clinician. I am a chronic illness and severe chronic pain patient who is no longer receiving appropriate medical care for multiple conditions diagnosed by specialists thanks to ignorant doctor's misdiagnosis and gaslighting.
I had to do it 3x but it was the standard azithromyacin and atovaquone - the tafenoquine was only recently developed or at least reported on through research to be even more effective. I’m not 100% but have been in remission almost 2 years so far.
Thanks for putting this on the Internet! I've been struggling almost my whole life just got diagnosed a year ago and I'm 45 years old, but still I have not gotten any better after a year of antibiotics
It took me 2.5 years after 7 years of going undiagnosed so it can definitely take a while! Get tested for coinfections too - I had Babesia microti undiagnosed as well and when they treated that a few times then my Lyme infection responded better to treatment.
Maybe if we could be medicated properly.. from crack downs on pain meds with no exceptions to generic manufacturers putting sugar pills on the shelves, it’s very hard to find consistency in treatment to the point of being able to deal and lead a somewhat normal life.
Thank you for that video. I have chronic migraine and chronic pain (amongst other chronic health issues), I can't count the number of times people have asked me if I tried this or that (acupuncture, yoga, going gluten free, etc)... I tell them "I have tried everything but thank you for your concern". Nowadays, I only get angry when it's coming from health care professionals trying to recommend completely ridiculous stuff ("have you tried cold showers?" ... I'm allergic to cold, but maybe an anaphylactic shock is what I need, thanks) or when it's clearly stated in my file that this course of treatment/action has already been tried and failed or is already in place, but they just didn't bother to read it. My now ex-psychotherapist, after a year, went with "I think you would benefit from massages and physiotherapy rather than just talk therapy", I had to remind him that I was going to PT 2x a week.
I was first diagnosed with rheumatoid arthritis after trauma from a seperation. Years later my rheumatologist diagnosed me with fibromaglia & I have to say that the pain is so chronic & far worse than rheumatoid. They call it the invisible syndrome cause you don’t look sick but once you spend days months or longer in bed you can honestly see it. Every part of your body hurts & there is no cure just meds to try & relieve some pain but they don’t even work at times. I’m no longer the person I was doing everything running a business, bringing up the kids involved in everything now I’m lucky if I can get out of bed to go to the toilet. You lose yourself, depression sets in & you no longer want to go anywhere or see people. Many people & even some dr’s don’t even know abt fibromyalgia & more has to be done to help those in pain & to discover a cure. It’s a horrible pain & some times I don’t want to be here if it wasn’t for my kids or granddaughter. We need help desperately. 🙏❤️
I recently got diagnosed with ME/CFS, probably from Long Covid (possibly had it before but on milder side, not sure), and almost definitely have POTS..and my life is slowly crumbling away. I cant walk very far, even within my house. I cant be upright for too long. I would LOVE to do the things (exercise, hobbies,socializing etc) people are suggesting that healthy folks take for granted. I cant, because they make me deteriorate. Even my parents who are my caregivers (sometimes unintentionally) invalidate me and pressure me to do things that make me worse. Having such a severe chronic illness has opened my eyes to the people in my life who truly have my back, and those who don’t.
Your symptoms will come and go, then you will get new ones. 28 years here, the pots didn't start until 3 years ago for me. A million different symptoms. I knew it was going to happen when covid first started.
My sister tells me, "Be grateful, it could be worse. Such and such is "REALLY SICK!" I have degenerative disk disease, Neuropathy, Radiculopathy, Chronic Bladder infections and rention from the Spinal injury, Von Willie Brand Disease, Lupus and Hashimoto Disease. I often fall, breaking bones and tearing ligaments and tendons. I had precancerous cells in my throat though I am not a smoker, I had a breakdown after my mom died and a hysterectomy because of the stress, a heartattack and a stroke all before 50 but she tells me that, "At least". I live alone and very rarely get family visits even though we live in the same city and the others in the same state. They call when they need favors, prayers, and advice. They tell me when they go on vacations, visit sick people, cook food, and help clean up but don't offer any of that to me. I just had reconstructive surgery on my dominant right hand. I told her, and she acted like I had said that I was going to the nail salon. A week later, she called and said, "You said that you have reconstructive surgery. What did they do?" "YOU SAID?" 2 minutes into my explanation, she said that she'd gone to visit a lady at her church and "she is really sick." Then I went outside and picked up limbs because it was such a pretty day. I was so stunned by her cavalier comments that I just said that I had to go. She seemed offended that I got off of the call.
That has pretty much been my experience too, with a few exceptions. As time has gone on, my immediate family has gotten a lot better about this, but it took having to disown my brother (a pharmacist, who should know better) for a year and a half, and nearly disowning my mother. Then they both came around. Most of the world today is affected with Main Character Syndrome. They want to be the star, and if you can serve as a helpful supporting actor then great, otherwise, they don't have much time for you. Also feels like most people aren't listening ever, just waiting for their turn to talk. Amanda really nails it with all the ways that even well meaning people make it worse. At the same time, it can feel like walking on eggshells when talking to other pain patients because you don't want to make a mistake. So all I'll say is it sounds like you've been through a lot, and I am sorry about that.
@crispycruiser4654 Wow!, you are so right with the "Single person syndrome" and people don't listen. I'm truly sorry that you've experienced this. It is a lonely walk to go through life altering illnesses without empathy or at the least, not saying anything if they don't know what to say.
I was diagnosed about 4 years ago with having suffered massive blockages in my heart that effectively killed about 40% of my heart tissue. The doctors at the time really didn't give me much hope I would survive. But I was able to adapt to necessary changes pretty well and found some good help from a few doctors that allowed me to manage the physical changes and limitations. What I've struggled with the most is the emotional stress, especially considering the extent of the damage and the likelihood of dying from this. So I know I'm oscillating now between depression, anger and acceptance. Sometimes daily, just depending on the day. Good video though, I did like the way she laid out the seven stages. I would agree that I've been at each stage at one point or another during the last 4 years.
Absolutely fabulous video. 👌 ❤ Nailed it in so many ways. Worst phrases ever "maybe if you".....Or......"did you try"...... "well at least". If they dont have chronic pain/illness, they won't get it. The end. Take care 😊
👆DING, DING, DING!!! Especially the "Well at least"! Talk about the ultimate put-down! You're so right, they will not understand. Why can't people just have a listening ear? They ask "why didn't you make it to the --- (family picnic, restaurant, graduation, ect.) You try to explain....and that is where they stop hearing you ... because what works for them...they assume will work for every human being. We know that that isn't true, some of us are sick/crippled all the time, although there may be an occasional day where we may get up enough gumption to make it out the door for a few min. or a couple hours if we are lucky. And unlike my former brother in law who witnessed my mother make it to the bathroom on her own once or twice, does not mean she was FAKING IT when she mostly could not!
Yep. I've experienced similar responses. Not helpful whatsoever. If someone asks me how I'm doing, I just say, "I'm fine". I mean, what's the point. They don't get it and they don't realize how lucky they are to not get it because they dont have chronic pain. We mostly dont think much about how our bodies work until it gives us issues and won't work the way we want it to. We simply assume our legs, arms etc work. If theres no pain, what's to think about. I had empathy for thise who had pain before I became ill and suffer with chronic pain. I felt so terrible for them and couldnt imagine what it must be like. My Mom had chronic pain and she'd be in tears often. But, she looked great so it didnt show. It throws your life in a whirlwind.
Most people don't want to hear the answer when they ask "how are you?" It's either a formality and just being polite, or its a segue into a question they want to ask for your input on something about themselves.
