The story of Susanne
The Battle of the Rare
One word to describe people living with rare diseases or illnesses is “dismissed”.
“We are at war with an invisible illness or disease that has taken over our bodies, uneducated medical providers, and society. We are paying the ultimate price for a crime we didn’t commit because there is no solid evidence we are looked upon as guilty”.
My name is Susanne and I am a rare disease warrior. In 2018, after years of watching my health decline and fighting for answers, and battling countless health providers, I finally received the answers to my health problems and I wasn’t prepared for what was to come. As the doctor went over my diagnosis with me, I sat there in disbelief. The only thing I could remember were the words rare disease, chronic, lifelong, and no cure. I went from feeling relief because I had thought I would finally be healed to disbelief.
I was young, active, and healthy. I didn’t understand how this could happen. I went from a happy, active mother of three children to a bedridden chronically ill patient with multiple rare lifelong noncurable diseases overnight.
It all began in 2016, feeling like I constantly had the flu. Each week I would develop a new symptom causing me to look like a hypochondriac. I knew I wasn’t a hypochondriac and the symptoms I was experiencing were real. They proceeded to worsen and it showed physically. I spent the next three years bouncing between doctors, emergency rooms, and in bed. I lost count of the number of doctor visits, emergency room visits, scans, lab tests, additional testings, and second opinions. Health providers would dismiss and medically gaslight my health concerns.
I was diagnosed with Behcet’s (beh-CHETS) disease, also known as Behcet’s syndrome. The cause is unknown, but it has been postulated that in a genetically predisposed or susceptible population, exogenous agents trigger the dysregulation of both autoinflammatory and autoimmune responses resulting in multisystem vasculitis. Symptoms may come and go, but Behçet’s is a chronic (lifelong) disease.
Signs and symptoms of Behcet’s disease are considered to be due to the inflammation of the blood vessels (vasculitis). The condition can involve arteries and veins of all sizes, damaging them throughout the body. The most common ones include:
* Sores in the mouth and on the skin or genital area.
* Joint pain and swelling (knees, wrists, elbows, ankles).
* Headaches.
* Sensitivity to light.
* Muscle aches.
* Fatigue.
Some people have only mild symptoms, while others have less common but serious effects, including:
* Symptoms related to central nervous system inflammation: limited eye movements, trouble coordinating movements, especially of the face and throat, stroke, memory loss, and seizures.
* Blood clots.
* Digestive system problems include pain, diarrhea, and bleeding.
* Vision loss.
In about 10% of cases, Behçet’s disease causes inflammation of the brain and spinal cord. Symptoms include fever, stiff neck, headache, and uncoordinated movements.
The central nervous system, heart, and intestinal tract may also be involved.
Shortly after, I received more devastating news. I received news of another chronic lifelong illness. My gastroenterologist confirmed the cause of my chronic stomach pain making it difficult and painful to eat was because of a condition called Gastroparesis. The specialist explained to me how serious Gastroparesis was as I sat in disbelief once again. Another serious health condition this time affected my stomach. My stomach had not been working properly and could keep food and liquid from leaving the stomach, even though there was no blockage.
When your stomach doesn’t empty well, it can cause pain, nausea, and vomiting.
problems like bloating, muscle weakness, and night sweats, ulcers, pneumonia, Severe dehydration. Ongoing vomiting can cause dehydration. Malnutrition. Poor appetite can mean you don’t take in enough calories, or you may be unable to absorb enough nutrients due to vomiting. Undigested food that hardens and remains in your stomach. Undigested food in your stomach can harden into a solid mass called a bezoar. Bezoars can cause nausea and vomiting and may be life-threatening if they prevent food from passing into your small intestine. Unpredictable blood sugar changes. Although gastroparesis doesn’t cause diabetes, frequent changes in the rate and amount of food passing into the small bowel can cause erratic changes in blood sugar levels. These variations in blood sugar make diabetes worse. In turn, poor control of blood sugar levels makes gastroparesis worse. Decreased quality of life. Symptoms can make it difficult to work and keep up with other responsibilities.
I have spent months hospitalized leaving with no answers, faced death in the eyes not once but twice, experienced episodes of viral meningitis, memory loss, delirium due to encephalitis, absence of seizures, a cerebrospinal fluid leak, loss of my stomach motility, have chronic abdominal pain, episodes of hypoglycemia with dangerously low blood sugar levels, episodes of Hypokalemic periodic paralysis, developed blood clots, passed multiple kidney stones, chronic Raynaud syndrome, had uveitis, severe dry eye syndrome, breast implant rejection, and implant removal, had multiple root canals fail causing tooth extractions, chronic sinusitis, chronically swollen lymph nodes, have endometriosis that leads to a hysterectomy, chronic numbness and tingling down both legs, I have a loss of movement in my left toes, chronic fatigue, chronic pain, poor circulation, chronic bruising without injury, weight gain, and secondary adrenal insufficiency due to overuse of steroids to treat my disease.
Living with a rare disease can make you feel isolated, lost, lonely, unloved, depressed, hopeless, frustrated, misunderstood, forgotten, and unheard. I have experienced a lack of ‘priority’ in the health system. A majority of doctors lack knowledge and interest in my disease. I have been forced to become an expert on my rare disease. I journal my health daily, track my health records, test results, scans, and kept photographs of my visual symptoms.
My rare condition has caused medical providers dismiss my pain. I have been medically gaslighted by health providers, and suffer from medical PTSD. I have no treatment plan and every medication I have taken has failed.
My faith gives me strength. I will continue to look within for my healing and I know miracles happen every day. Just because someone tells you something doesn’t mean you can’t prove them wrong!
Every day I continue to strive and advocate for myself, and the voiceless, raise awareness about rare diseases, and awareness of the importance of health equality for the rare disease community.
THIS IS WHAT GASLIGHTING LOOKS LIKE BELOW!!!!