Growing up, I struggled with severe stomach pain. Doctors would say that I needed more fiber. Nothing seemed to help. It was miserable for me. I’d often go to the nurse’s office at school where she’d let me eat crackers and lay down. She just thought I was hungry. My mom even took me to the emergency room once and they had no idea what was causing my suffering.
Fast forward to my teen years when I was told I had endometriosis and cystic ovaries. I was told I’d probably never be able to have children. And again, more debilitating pain and suffering. Going up and down stairs at school became intolerable. Holding down a job became equally challenging when once a month I’d be in so much pain I couldn’t move and was bedridden. I also became intolerant to cleaning chemicals at work. I started coughing up blood.
I remember one teacher at school telling me I basically had to suck it up and carry on, that no one would help me. I know she was trying to help, in her own way, but it wasn’t helpful. It just made me realize that my illnesses were invisible. No one could see or feel them for themselves, so they couldn’t understand or believe me and it was going to make life much harder. It made me feel small and completely alone. There are days I still feel alone with it.
After having an ectopic pregnancy, that almost killed me, as a young adult, things snowballed. I was diagnosed with anemia. I started having dry mouth, heavy periods that would last a month or longer, severe pain in my feet and hands, my hair started falling out, and more. It got so bad that I couldn’t lift a gallon of milk! I started to gain weight for no apparent reason. My diet hadn’t changed. Despite my pain, I was still trying to keep active.
Doctor’s had no clue as to what was happening. Medicines they prescribed did nothing to heal me or take away the pain. I learned to just suffer through and do my best every day. It’s all I could do.
One doctor, at the time, said I had fibromyalgia. But fibromyalgia was so new back then and after the medication she gave me did nothing for me, I thought she was full of it, to be honest. I was in my early twenties. I didn’t get another opinion on that diagnosis. I just carried on the best I could.
Around the age of twenty five, I became pregnant with my son. I was so happy. My husband was worried the whole duration of the pregnancy. He thought we’d lose another child and that it could possibly even kill me this time.
I developed toxemia and pulmonary edema (water on my lungs that was crushing my heart). I was extremely swollen and I couldn’t breathe and the hospital I went to said I had asthma. But, I didn’t, at the time. I was dying, but because it was the weekend, my doctor didn’t show up to the hospital and I languished for days, until he had me transferred to a different hospital on Monday. I was there a day before they decided to take my son early by cesarean. I recuperated in the hospital for a week after and my son stayed in NICU for two weeks.
Years and more suffering later, I had my thyroid removed because I had two lemon sized tumors on it that were causing me a great deal of pain. They found small traces of cancer, after it was all removed. I didn’t need chemo or radioactive iodine, though. I continued to gain weight and suffer from extreme fatigue, pain, and other odd symptoms, despite all my best efforts. And getting help with this was a long drawn out nightmare in of itself.
Synthetic thyroid hormone replacement made me more sick. I had to demand/beg for natural thyroid hormone replacement and it helped. My energy went up and I stopped having chronic bronchitis.
A couple of years ago, I lost fifteen pounds right out of the blue. No idea why and doctors didn’t try to find out. They just congratulated me on the weight loss. During this time, I started to have heart fluttering and pains in my legs, numbness and tingling all over, and pains in my back. Then, my primary care doc told me I’d leave my son “motherless”, if I didn’t lose weight. By then, I’d lost thirty pounds, and despite feeling stronger and lighter, I started to feel worse. But, his support consisted only of him telling me to do a lapband surgery and to dismiss me completely. His comment kicked off my bought with medical PTSD. I started to believe everything I did was wrong and I was going to die and leave my son motherless. Eating healthy, weight training, cycling, and walking all weren’t good enough. That’s the message the doctor gave me. He placed the blame solely on me and didn’t care to investigate further. And while all this is happening, I got diagnosed with macular degeneration and was told I’ll go blind in ten years.
Then, last year, just before the pandemic hit, I was diagnosed with psoriatic arthritis and fibromyalgia by a rheumatologist. A rheumatologist I had to schedule an appointment with myself because at this point, I was willing to try all sorts of specialists to get answers. My doctor should’ve recommended a rheumatologist years ago, but didn’t. He’d lose his “cash cow”, for lack of a better term, in my opinion. Maybe, I dunno. I can’t even begin to understand what drives a doctor to be so careless and abusive to his patients.
The unfortunate side of being diagnosed with fibromyalgia, is that a lot of physicians label their patients “mystery” illness as fibro because they don’t know what it actually is or because they believe the patient is a “hypochondriac” or faking or seeking attention, which is usually the furthest from the truth.
People are suffering and they need and want actual help. There’s a stigma there. And to be clear, I looked up the definition of hypochondriac and it means basically to fear death or be abnormally anxious about their health. It doesn’t mean to fake illness at all, so people use the term wrong all the time. And to be anxious about your health can stem from poor healthcare and being mistreated by doctors.
My newest diagnoses have been extremely difficult to deal with. I wanted to believe I had hope at a cure and returning back to a healthier, happier me. But now I know, there is no cure coming. And the medications to treat are as bad or worse than the condition itself. That’s the choice I have to make now. My first biologic injection (that I had to give myself at home) helped. I felt normal, until I didn’t. It caused my insides to feel like they were on fire and it caused me to be severely constipated. TMI, I know. I’m sorry, but it’s true. So, I had to stop it and now I’m waiting for approval of another biologic. I don’t have health insurance, so it makes fighting these illnesses that much harder. I’ve been waiting a couple of months now.
The rollercoaster of emotions has been almost as unbearable as the illness. This past year I’ve really had to take stock of what’s important to me and I’ve had a lot of time to think. So, I decided to put in the hard work of dealing with childhood trauma and the medical trauma I’ve suffered with most of my life and especially now as an adult.
I’ve done most of the research into trauma and how to heal on my own. Pinterest is a great place to find helpful articles, by the way! And I’ve been journaling. But I got to a point where I needed help from an outside source. And an art friend of mine who does therapy offered to help and her timing was perfect. With her guidance and knowledge, she’s helped given me the tools I need going forward. I’m incredibly grateful for her generosity and insight.
I honestly thought that when I left the abusive environment of my parent’s house, after becoming an adult, I’d be okay. And I thought I was. I was safe and I didn’t have to think about the bad things that happened to me anymore. But the truth is, your body remembers. Your nervous system remembers. Your subconscious remembers. And trauma can be linked to chronic illness, so I want to help myself as much as I can. That way, I can feel better. I figure the mental and emotional aspect would help the physical. And here I am. I know I’m doing the best I can. And I forgive the doctor. Not for him, but for me. The pain and anger were only hurting me and holding me down, so it was time to let it go.
The entire year in quarantine put a lot into perspective and I’m glad I’m putting in this inner work. It’s okay to feel emotions. Emotions are passing and they are trying to tell us something. We just have to listen and love them. We have to love ourselves and be kind and patient with ourselves. Creating my art helped me through this past year a great deal also. It was the best outlet for me. And it will continue to be, moving forward. As long as my body will allow.
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