I am 28 years old, and to the world, I look perfectly healthy. Except for some very scary scars, you would never know how much my body has endured. At 16, I was diagnosed with juvenile rheumatoid arthritis, after the doctors first told me I had lupus. Not long after, I was being admitted to the out-patient cancer center every few weeks for low dose chemo treatments to slow the progression of my disease. I was also taking more pills than I had ever seen in my life. Instead of going to class every day, the local school board sent a teacher to my home 3 times a week. By 18, I was receiving steroid injections in my back for pain control.
During my college and graduate school years, my tonsils and adenoids were removed, I had more MRIs and CT scans than I could possibly count, and saw more doctors than the phone book ever dreamed of knowing. It was briefly thought that I may have stomach cancer, and for 2 weeks, I lived in pure fear. A month later I was diagnosed with endometriosis. I never had what you might consider a “normal” period, but then nothing about my health has ever been what you might consider “normal”. This diagnosis started one of the lowest times of my life, but I knew what to do. I asked for help. I was on hormone treatment; I was in medically induced menopause. After 6 months, I was brought out of it, and I got better. About a year later, I was diagnosed with narcolepsy. I was suffering from what I would soon learn was called severe sleep paralysis, night hallucinations, night terrors, and cataplexy.
At 27, the decision was made that everything medically possible had been done to help my endometriosis, and the only thing left was a hysterectomy. That is the single hardest decision I have ever made. As a single woman with no children I was faced with a choice. Either way, the result was the same, pain. There was no way around the pain, and both would be long term. I chose the hysterectomy, deciding that ultimately I did not wish to pass my genes on to another generation. And though I do not regret this decision, I have battled with it each and every day since that fateful day.
So, as a woman with rheumatoid arthritis, narcolepsy with cataplexy, and resolved endometriosis, I know what it feels like to want to give up. I know how hard it can be to just get up every day. I know how hard it is to look at the puzzles pieces of your life and think there are too many missing to put it back together AGAIN. But I also know that for some reason I was chosen for this journey, for some reason I alone was picked to walk this path, and that gives me courage. There must be something in me that can do this, and that is why this girl fights!
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
“When life knocks you down, stand back up and say, You hit like a bitch.” You are inspirational, and I am here to say that I also have Narcolepsy and Endo. I am currently going through tests for RA and still waiting for results!! Keep your head up doll, You are truly strong and show more fighting power than most 🙂
Kristen, my name is Kristin.
Your story is making me tear up at the moment. I’m going in on Monday to test for endometriosis after recently being diagnosed with narcolepsy with cataplexy. I’ve been going to doctors since I was 14 to get an answer to my fainting and sleeping probs and all seemed stumped until now. Although I am now having regular periods on a monthly basis for the first time ever (18yrs of periods), the fainting narc spells are gone, but the cramping is still unbearable. I also get these types of cramps a few times a year when not menstrating to the point of considering going to the ER.
The women on my moms side of the family all have fainting issues, but in different ways. I’ve urged all of them to see if they are narcoleptic for the sake of their health but for offspring to know what to expect in the future.
I’m the odd one in the family that I have never (up until the past 3 cycles) have had regular periods. They could be 6 wks to 4 months apart and last about 5 days. The pill does nothing but make cramps worse, cause fainting spells with dream hallucinations, and downside… I get 12 periods a year and paying money for it.
I have a Dr right now that I have asked of him to be blunt with me if there is a possibility I can’t have kids. I just want to know what to do to be a healthy me and what is the true cause of these horrible cramps I get. I would really like to talk with you more with questions I have. I’ve never been to this site, please let me know how you are doing now.
Amanda and Kristen, I’m so glad to of found this site. Thank you for sharing!
When I was 14 in the 8th grade I gained 25 pounds in a about a month. Couldn’t stay awake in any of my classes and knew something was wrong when I was falling asleep while eating. Dealing with hereditary depression being a teenager and my back started hurting really bad sometimes randomly shooting pain down my spin. I went to the doctor and he sent me to have a sleep study but it was just a regular sleep study not the one they do to test for narcolepsy. I was diagnosed with restless leg syndrome and he continued to tell me it was normal for a teanager to be that tired and I was fine. Also that there was nothing wrong with my back and I just needed to work out. I tried sports and within the first month or track I dislocated my knee and twisted my ankle. My doctor advised me to drop out. Saying I must have weak bones.
I slept a lot in high school. I am very smart but you could never tell if you looked at my gpa because I couldn’t ever find the energy to even want to move in the morning. When I was 16 I totaled my car and another car when I fell asleep at the wheel after work at 3 in the after noon. My mom then told the doctor there has to be something wrong with me. I did not just crash for no reason. So I was sent in for another sleep study this time the right one. I also started going to counseling around this time. I wasn’t diagnosed and starting to get medicine until the beginning of my junior year. Now 17.
At 17 my depression had worsened and even though I would never do it I started having suicidal thoughts. The several different medications I was out on we’re not working. No matter how much adderal I would take I’m still tired. Then I started to get migraines putting me in bed for days. My doctor had to call my school and tell them I was incapable of getting out of bed.
My second semester my whole body started hurting, getting out of bed would make me cry. I lost a little weight because I wouldn’t get out of bed to eat. I tried to go to school. Going out side in the cold I felt as if I were going to snap in half. The nights were even worse. I would turn on my shower and sit in the bottom of my shower in the hot water til it ran out. Then I would spend about 30 minutes trying to get out of the bottom of the shower because my mom went to work at 3:30 or 4 and I didn’t want to wake her up. My best friend was living with me and she ended having to help me get out of the tub every night, brush my hair, get dressed, and often write down my answers for homework because my fingers were so swollen I couldn’t bend them. The doctor told me I had rheumatic fever which is an old disease that a lot of people died from in the like 60’s. I do not test possitive for rheumatoid arthritis.
Another doctor had diagnosed me with rheumatoid arthiritis. I had missed a lot of work and school trying to figure all of this out. Then I was put on steroids that made me super fat and depressed and made a lot of my hair fall out. I was crying all the time. Then I started to get abscesses a lot. I had received about 6. Over a span of 1.5 years. Come to find out I had mersa that whole time which is really really bad for your health.
By the end of senior year my gpa was like 2.6 and I was just trying to make sure I got to graduate. Crushing my dreams to go away for college. I didn’t get to go to my best friends grandpas funeral because of my cataplexy and I told her even though I wanted to be there for her it would have ended up she would have to take care of me.
I am 19 now still have a lot of stiffness and joint pain. I take a shot once a week. I Am always tired. Trying to work full time and go to college which is not really working. I do not have time to work out to try and help the arthritis. It seems like no matter how hard I try it won’t ever matter because one of my medical issues will just hold me back. All I have ever wanted is a family so I am trying really hard to get school done and get a good job so when I want to try and have kids I can be able to stop all my medicine.
My neurologist tells me he is very proud of me cause his other patients would have given up by now. He also tells me no one will ever understand and people will always think I am over reacting and I am fine because I am 19. But this 19 year old has more problems then her grandma.
I am still trying everyday. Even though most days I just want to cry.
I just wanted to thank you for putting your story online for people like us to find. I also have Narcolepsy with cataplexy and rheumatoid arthritis. As if the N+C isn’t enough of a rollercoaster ride, the RA ups and downs keep me on my toes. (well, in bed on really bad days, actually) Like you, I was first told I had lupus before being diagnosed with the proper invisible illnesses. I was 22 when I got the N+C diagnosis and it likely started around 16. I struggled for years trying different meds to have a more normal life. Once I had a pretty good handle on that, around age 30, I started developing inflammatory joint disease. It took another 3 years to have the RA diagnosis by a rheumatologist. Daily steroids and immunosuppressants and I’m 38 now and still have really bad days…but I keep fighting like a girl too! Managed to hold on to my job in the medical field for the past 5 years. That’s a streak for me! I would have to leave an employer after a year or so because my absences from sick days would have me on their list of most disposable employees. I was never fired from a job – because I’d resign before it could happen…and start all over again somewhere new. At this point in life, I feel like I have a little control over my invisible illnesses with the meds I have to take. But I’ll never be normal and always have to fight through the symptoms…taking every day one step at a time. Anyway, thanks again for sharing your story and allowing us a place to comment/vent/share our story. ♡
Kristen, I too was dx’ed with RA at 16. I just had my hysterectomy last year at 32. I just received my diagnosis of narcolepsy.