I know an incredible woman who struggles with childhood trauma like I do, but she struggles with it with a proactive attitude similar to me. It can be hard, but at the same time, she is learning, growing, evolving, and using some of her difficult experiences to help others through writing and speaking. She is doing so much of what I hope to have the strength to do more of someday soon.
Her focus is on self care for medical parents. By that, I mean, she was born with a daughter who had a genetic defect who had major heart surgery as an infant and many other serious health struggles as she grew. She understands now how she didn’t take care of herself at all and how much the stress affected her. She’s using her experience of what she did wrong to reach out to other parents who have sick children (any illness) by writing articles for “the mighty”, sending out a weekly newsletter, and will eventually publish a book.
Her recent article in “the mighty” struck me so much as her expression of love and concern was genuine and real for her sick daughter. Talking about loving her wasn’t the point of the article, but I immediately sent her a text how proud I was of her for being such a loving mother to her daughter, and I loved that she took such good care of her, especially as I was a sickly child whose mother found my illnesses to be a “bother” or “dramatic” or she just didn’t believe me. My friend sent back a reply of wondering what would have happened to her if she had been sick with how her parents were. I could have probably sent her a textbook of what she would be had that happened as I live it. Instead, I’m going to put it succinctly here for anyone else managing chronic illness(es) who had abusive parents.
I get afraid I’ll get called “dramatic” by my doctors if I tell them my real truth of how bad I am. It’s so bad that I canceled my doctors appointment tomorrow as I’m so unwell I don’t want my doctor to see how I am. I couldn’t really drive myself, but I could have found a way there.
On my really bad days, I won’t allow people to come over as I don’t want people to see me. If you are sick, you do it alone.
I have learned that you don’t ask for help as people will again believe I’m being “dramatic” or not even sick. I have personally reinforced this by not being truthful with people who want to help and only sharing my victories, so no one knows how bad it is. The one day I was going to allow a friend to see how bad I was, she couldn’t get the keypad or the actual key to work on my front door. I took it as a sign that I stay sick alone.
I don’t even trust myself that I’m sick. I tell myself constantly “to get over it”. “Stop being dramatic Lizzie, you’re fine”. My mom never trusted I was sick, so why should I trust I’m sick? I am homebound in absolute agony, not even necessarily from pain, but I get these horrible chills where I may shiver for hours, which makes me sweat, making me more cold as I’m soaking wet, but the idea of getting up to change my clothes or move to the dry side of my bed is impossible. I also have a couple days where I get overcome with huge fatigue, dizziness, my eyesight goes wonky to where I see double or it’s blurry and know I have to get to my bed. These couple days a week when I’m in what I can only call a “flare up” of my illnesses, I make it usually within a few feet of my bedroom door. When I was still walking, I usually would just go to the ground and fall asleep. Now that I’m using my wheelchair more often than not, I have to get out of my wheelchair and get to the ground. All I can say is the fatigue becomes totally overwhelming. I now have one of those watches that show your sleep patterns. Today, I slept on my hardwood floor for 3 hours and 45 minutes. The sad thing is that I usually wake up as my dogs will lay next to me and eventually they are crying loud enough that I literally crawl and get myself into my bed. They aren’t crying as they want something. I truly think they mourn for me. They are very in tune with how I am.
When your mom didn’t care that you were sick, you learn to become overly self reliant. The other day I had to do something requiring climbing a 3 step ladder. I can’t hardly keep myself upright to walk, so why would I climb a step ladder? You see, I have to do it myself. No one cares I’m sick. And as you can imagine, I DID fall off the step ladder. The really dumb thing is I realized I hadn’t hurt myself too badly, so I got up and finished my task. Instead of being scared of what had just happened, I was actually proud of myself for doing it. Crazy for sure.
I drop things constantly. Today, I dropped a tea kettle of boiling water on my legs as I was seated. Instead of having compassion for how much I hurt myself, I just said to myself, “you’re stupid and need to stop doing these stupid things”. I had zero compassion for myself as I would for someone else who would have done the same thing. I just figured “it was nothing”. My burnt legs still hurt, but I must be dramatic.
I think the worst part is that I learned not to ask for help. When people would offer help, I would decline as I felt guilty as I’m definitely not worthy of help when I don’t feel well. Or sometimes people would help and as they don’t understand the nature of what I’m managing, people could become judgmental of me. Before I got really bad with my walking, I would use my forearm crutches outside of the house, but I used my leg braces to make it around my house. Someone was here and got a comment, “look at you walking just fine” in a condescending manner like I fake it. It reinforced that I don’t want anyone around regularly as they don’t see all of me. I may have walked across my house that day, but I collapsed in my bed and only got up for several days to let the dogs out and maybe went to the bathroom once a day. I didn’t even get myself water for a couple days as why would I ask if someone comes by, and I happen to have a decent moment and can get it myself.
I have learned to say that I’m “fine” and “ok” when I am so not ok, you wouldn’t believe it. I’ve learned no one likes a sick person, especially with rare diagnoses that no one has ever heard of.
I figured out that people are too busy to spend time with me. They will say they are tired, have a cold, not actually celebrating their birthdays, have to work, but the next day birthday parties show up or good times with friends. All I have asked so many is to just go out and have fun. I figured out I don’t matter as a sick person.
There are many other ugly things about being a sickly child with a mom that not only didn’t care, she was angry that I would take up her time with my “neediness”, but the list would go on and on. It’s just turned into a ton of my own self doubt, like this is all my fault, if I only tried harder, hiding how sick I am, not being forthcoming with my doctors about how bad my physical symptoms for fear of them thinking I’m just “dramatic, crazy, attention seeking”, people don’t have any interest in truly being a friend to a sick person… I do still struggle with it as my own biological family doesn’t believe me even today, and if I do try to talk to them about a possible new diagnosis or symptom, I get treated with skepticism and have been warned that these doctors are just trying to take me for all my money and somehow my real problem is stupidity, not illness.
After all that really horrible stuff that I have been taught about what I “know” is the “proper” way to be sick, I have made progress. I allowed the pain management doctor to hear me slur my speech really bad as I knew she would have compassion and not scorn or think I was dramatic. It was obviously real and couldn’t change it. She’s seen me a handful of times and knows me to be articulate and speak clearly. I made sure to let her know this is actually my normal quite often. I have just learned not to talk to people when it happens as more than one person has called the ambulance fearing I was having a stroke. Texting is how people communicate. As much as I hate it, but I can hide a lot, including my slurred speech or my emotional pain of doing so much that exhausts me.
I am learning to allow people to see me bad off. A friend came over the other day after I had a string of bad days. I told her we may literally have to lay in my bed. It wasn’t actually one of my worst days, but it was one of those days I couldn’t sit in the living room. She looked hesitant to sit on my bed and even a bit awkward. I asked her to please sit. She sat at the end of my bed while I was kind of propped up at the head. Someday, people will maybe lay down with me and give me comfort. I understand that it’s awkward to lay in someone else’s bed, but I will tell you sick people need a lot of comforting.
I’m figuring out how to ask the proper people for help whose only payment they want is my company. I have a follow up with the cancer specialist next week. I asked for a ride as my ability to get there will be questionable as it’s the morning after my IVIG infusions, and I tend to feel awful for a day or two after. It’s important I get to the oncologist though as I will probably get real answers that day. Not only do I need to be there, I might need emotional support depending on what I get told.
I’m genuinely learning what I can and can’t do. If what I’m going through right now ever truly remits, I can’t climb mountains. I can’t run marathons. Beyond everything else I’m afflicted with, I have a couple neuro immune diseases that mean I have to adjust the expectations of myself. Right now, it means I’ve had to quit my more advanced yoga class a couple times a week to try a more gentler version once a week. I’ve had to forgive myself for not working on my book or painting or do anything future related. I’ve had to cut my circle to tiny as I CAN do things for people, but my abilities have changed. I can’t support many in their own drama. I can support people working on trauma recovery who are genuinely committed to wellness. It doesn’t have to be my way of trauma healing. Sometimes people need an ear to express their pain. I’m here for that. I’m here for that if they are solution oriented. I don’t have the energy to listen to people go on and on about their misery when they were just going back to the same old thing regardless. I was spending hours on the phone with multiple people daily who enjoyed complaining. I don’t have the energy for that. I need help too, not just helping others. As someone who used to only give to the detriment of myself, it’s huge to put myself first.
I have made HUGE strides in understanding that as a sick person, I absolutely don’t deserve cruelty and have to set boundaries. I lost my son over setting a boundary of wanting to discuss some cruelty that some was definitely happening, other parts, I wasn’t sure of. Instead of getting a conversation with a neutral party present as I requested, I was blocked from all communication with my son. Does that hurt? Absolutely and more than I can ever express. My son might be better off not seeing his mom sick and not dealing with all the complexities of negative things that were said about me and seeing the reality of who I was. I read all these beautiful stories of parents who had split and weren’t necessarily fond of each other, but when one parent became sick, the healthier parent would make sure the child still saw the sick parent and after the visit, the child could go back to the healthier parent as a safe place to process their feelings. I was told directly by one of his other parents not too long ago that “your son doesn’t care about your health problems”. It’s unfortunate as that’s not what he told me. He said he didn’t feel safe talking to anyone about it even though I encouraged him to talk to his other parents, or a therapist, or any adult he trusted. He said he didn’t trust anyone but me. I feel bad as I do believe that I was a very good mom, but I obviously didn’t model, nor has anyone in his life that it’s ok to ask for help with the hard stuff. I hope he’s asking for help now and not just pretending to be ok. Or if he does seem ok, I hope he genuinely is as having a sick mom was both inspiring to him and frightening.
So I guess to answer my friends question, it has been incredibly difficult to have had a mom that found me being sick irritating, to put it lightly. The illnesses haven’t been nearly as hard as the cognitive distortions that goes along with a lifetime of believing being sick was wrong and to continue to have a family that believes I am just lazy. I wish they knew exactly how much I grieve having to put my goals and dreams on hold and the fear that comes with never being able to do much of anything. Productivity = worth in my family. My being productive is unlearning the garbage they taught me about life, finding joy in even the tiniest of things, becoming authentic when you once had no idea what that meant, accepting the love of others when you have been convinced you are unlovable. My being productive is getting to this blog when I can to spread the word that healing happens even if it’s often ugly, painful, lonely, makes you feel crazy. Many of you have made it clear it helps you.
The beauty is that even though my childhood was taken, my health has been taken, my child has been taken, I’m still not broken and continue to move forward even though some days it’s much slower than others. I’m still alive and grateful for so much even on the days where lately I’m slurring my speech, falling over from fatigue, losing activities I love, often can barely breathe as I know people DO care.
I did cancel my doctors appointment tomorrow. Maybe someday I can feel comfortable enough to give her the really ugly parts. I’m working on it. Tomorrow, I will work on self care and understanding I have no reason to be dramatic.
(Many pictures of the pain of being sick and alone)
Lizzie (And I apologize to a handful of people for not being authentic about my struggles. I hope it makes more sense now.)