I have struggled with my health for 18 years, but I have only had diagnoses for 4 years. This is because I was dismissed by doctors for years. Sometimes, my results would come back “normal,” and since I didn’t look sick, doctors would say there is nothing wrong with me. They would suggest that I was depressed. Other times, my results would not be normal, but would not be a clear diagnosis, so doctors would tell me they don’t know and wish me good luck. It took many years to find doctors who believed me and were willing to figure out what was wrong with me. Unfortunately, this is not uncommon for people with invisible illness.
My health problems started a few days after my 11th birthday. My left fallopian tube twisted into a knot so tight it cut its own circulation off and died three days after I turned 11. Doctors did not know that is what was happening to me right away. It was a few days of severe pain, a dangerously high fever, and almost dying before they discovered and removed my dead tube. My health was never the same afterward. It wasn’t as bad in the beginning. At first, I always seemed to be the first one to get tired even though I was an athlete. I would also feel completely wiped out by Saturday. That progressed into me feeling tired all the time and never feeling refreshed even after a full night of sleep. Doctors couldn’t figure out what was causing this, so they wrote it off as my new normal after surgery. My fatigue got worse as time passed. I also developed breathing problems towards the end of eighth grade that turned out to be asthma. That explained my breathing issues, but not my fatigue. Then, I suffered a ruptured appendix during my junior year of high school. My health declined significantly after that surgery. I caught frequent viruses, and my fatigue had also increased substantially. I was in a permanent state of exhaustion even with adequate sleep. Again, doctors had no answers, so they told me this was my new normal after surgery once again. Since I was living in north Georgia at the time, and because there are not a lot of doctors there, my family and I accepted this. I endured and pressed through high school.
I had a brief improvement in my health when I moved from Georgia to Tampa, Florida for college. My body did much better in the warmer weather. I rarely caught viruses for the first two years. Since I was no longer doing track and field (exercise was my main trigger at that time), my asthma seemed to have gone into remission. Waking up in the mornings was still difficult, but not as much as during my final years of high school. My health continued to improve until the beginning of my junior year when I was bitten by a black widow spider. The neurotoxin from the spider’s venom almost killed me and caused my health to plummet. Once again, I caught frequent viruses as if my immune system was wiped out. It was harder than ever to get out of bed in the mornings, and the fatigue would never go away. It was a fight to stay awake all day. I had begun to experience joint pain. My asthma was back, and now it was severe and with numerous triggers. Some months, I would have more than 100 asthma attacks, and a couple of them landed me in the hospital fighting for my life. Up until this point, my health hadn’t prevented me from achieving whatever I wanted to accomplish. I got straight A’s and was a varsity athlete through high school. But that was no longer the case. I was on the verge of failing out of school because I was either too weak to get of bed or I couldn’t breathe well enough to get to class or to study. Since I was a college student with no health insurance, my resources for medical care were limited. The only access to care I had was through my university’s student health center. When I went to try to get some help, I was told, “Black widow spider bites don’t cause any long-term effects, and you don’t have any reason to be tired, so you are depressed.” They refused to do any kind of bloodwork or tests because “I had no reason to be tired.” I had no money or insurance, so I just had to endure until I graduated from college at the end of 2012.
It took a few months to find a job after graduation, so by default, I had an extended period of rest. My health benefited from this. Once again, I no longer had frequent viruses. My asthma attacks became infrequent, joint pain was all but gone, and my energy was improving. I stayed this way through most of 2013. Towards the end of 2013, I started getting periodic lower right quadrant pain that would accompany a fever. Had I not already lost my appendix, I would have suspected appendicitis every time that happened. This continued through most of 2014. My doctor suspected it was related to my ovary, so she sent me for an ultrasound. The results came back normal, so I was told there was nothing wrong with me. I changed jobs shortly after this, so I had a period of time without health insurance, so I couldn’t pursue it any further. I also suffered severe insomnia through most of 2014 until a severe asthma attack in August of that year landed me in the hospital. My health started declining rapidly shortly after. My insomnia became hypersomnia, my joint pain had returned, and my fatigue was worse than ever. I would wake up feeling completely disoriented and as if I had been drugged. My days were spent fighting with everything I had to stay awake. I felt unwell all the time. New Year’s Eve was particularly hard for me that year. I was at a party struggling to stay awake and just felt horrible. That was the moment when I decided that I was going to get real answers to my health. There was no way that this could be my life. I vowed to spend 2015 getting real answers about my health.
Stayed tuned for part 2 of my diagnosis journey.
56 COMMENTS
Diane Kurzava
5 years agoI need to read the rest!!
Amy Martinez
5 years ago AUTHORPart 2 is coming soon 🙂
Noelle
5 years agoI’m so sorry you went through all of this. I can’t wait to read part 2 and see if you got some real help!
Amy Martinez
5 years ago AUTHORStay tuned 🙂
Erin
5 years agoIt sounds like you’ve struggled a lot and been dismissed by a lot of health professionals. That must be frustrating. I’m definitely looking forward to part 2!
Amy Martinez
5 years ago AUTHORDealing with health professionals that were quick to dismiss me was one of the most frustrating parts of my journey.
Cindy
5 years agoI am in evaluation for a diagnosis of Asthma or COPD. It is on hold with the COVID-19 as no routine medical is happening but I will get back to it. I hope you are in a better place medically. Getting answers can be so frustrating.
Amy Martinez
5 years ago AUTHORThank you. I hope you are able to find answers soon.
Cindy Moore
5 years agoI want to read part 2 also! I struggled for 20+ years with health issues and found my answers apart from traditional medicine. I healed. I’ll wait to see the rest of your story before sharing more!
Sydney
5 years agoLooking forward to what they found out! I can’t imagine going so long without answers
Amy Martinez
5 years ago AUTHORPart 2 is coming soon.
Debbie
5 years agoHate that you had such a long, painful and challenging journey! Looking forward to Part 2 and hoping you got answers and are doing well now.
Amy Martinez
5 years ago AUTHORThank you.
Lisa Manderino
5 years agoThat is so frustrating! I hate when you know something is wrong yet the doctors won’t listen!
Amy Martinez
5 years ago AUTHORI have good doctors now, but it surprised me how many doctors refuse to listen. I know too many people with similar stories.
Jennifer
5 years agoIt’s hard to get someone to listen. I have some medical professionals that listen to me now.
Amy Martinez
5 years ago AUTHORI am glad you have medical professionals who listen to you.
Sara - Seek Discover Learn
5 years agoI would love to read part 2 and hear what you discovered. I agree that it’s hard to get doctors to listen to you sometimes. In 2017 I went to my PCP about hip pain I was having. He requested an x-ray and when it came back normal he sent me to my rheumatologist to see if it was Rheumatoid arthritis. She said she could order an MRI but wanted to send me to 6 weeks of physical therapy first. After 6 weeks of physical therapy she finally ordered the MRI only to discover that I had a bone fracture and avascular necrosis (dead bone tissue). I went for a total of 6 months in excruciating pain before I finally got this diagnosis, which ultimately ended in hip replacement surgery. Now I know that I need to do a better job of advocating for myself.
Amy Martinez
5 years ago AUTHORI am so sorry you had to go through so much pain. I hope you are doing better now.
Casandra
5 years agoSo sorry you had to go through all of this. I look forward to reading Part Two!
Amy Martinez
5 years ago AUTHORThank you!
Debbi H
5 years agoSuch a difficult time for you! I’ve struggled through some similar health issues, and I know how discouraging it can be (especially when the diagnosis takes such a long time). I’m looking forward to the next part when you hopefully have found help and are feeling better.
Amy Martinez
5 years ago AUTHORI am sorry you have gone through similar health issues. I hope you are in better health these days.
Tim
5 years agoI am looking forward to reading part 2. Going without a diagnosis is really hard.
Amy Martinez
5 years ago AUTHORBeing undiagnosed was just as hard for me as dealing with my diagnoses.
Tricia Snow
5 years agoI am really interested to hear more. I feel like many people go undiagnosed or are misdiagnosed.
Amy Martinez
5 years ago AUTHORUnfortunately, going undiagnosed or misdiagnosed for a long time is a common story for people with invisible illness.
Angie
5 years agoLooking forward to the next installment! Thanks for sharing your story.
Amy Martinez
5 years ago AUTHORThank you for reading my story.
Hillari
5 years agoIt is so sad that stories like this seem to be more and more common. Your story is beyond frustrating – I can only imagine how it all made you feel. Thank you so much for sharing.
Amy Martinez
5 years ago AUTHORThank you for reading my story. It breaks my heart that so many people go undiagnosed or misdiagnosed because doctors dismissed them.
Suzan | It’s My Sustainable Life
5 years agoWhat a long time to be diagnosed! Look forward to the next chapter of your journey
Amy Martinez
5 years ago AUTHORPart 2 is coming soon.
heather J jandrue
5 years agoLooking forward to reading part 2. I am sorry you have endured so much pain.
Amy Martinez
5 years ago AUTHORPart 2 is coming soon.
Tiffany
5 years agoMy goodness – what a journey so far! Awaiting part two….
Amy Martinez
5 years ago AUTHORStayed tuned!
Christina
5 years agoWow, I’m so sorry to hear that so many crazy health-related things have happened to you. I hope it is all sorted out now and you are getting proper treatment! Looking forward to reading part 2.
Amy Martinez
5 years ago AUTHORThank you. Part 2 is coming soon.
Jason Gowin
5 years agoI’m sorry you struggled with such a rough time getting this diagnosed, but am glad you have a better scope of it now!
Amy Martinez
5 years ago AUTHORThank you.
Tonya | the Writer Mom
5 years agoIt’s so hard not knowing what is happening with your body. I’ve had some problems with invisible illness, too, although not to the extent you have. Wishing you all the best!
Amy Martinez
5 years ago AUTHORI am sorry you have also dealt with invisible illness. I hope you are doing well.
Kendra
5 years agoWhat a frustrating journey! I’m intrigued to read part 2!
Amy Martinez
5 years ago AUTHORStay tuned!
Chantelle
5 years agoI’m sorry you went through this! Hope you finally got help!
Amy Martinez
5 years ago AUTHORStayed tuned for part 2!
jen
5 years agoThank you for sharing your journey.
Amy Martinez
5 years ago AUTHORThank you for joining me on my journey.
Lisa
5 years agoI am so sorry you had such a tough journey.
Amy Martinez
5 years ago AUTHORThank you.
Sandi
5 years agoGreat intro. Looking forward to how you get under control in part 2.
Amy Martinez
5 years ago AUTHORThank you. Part 2 is coming soon.
Michele
5 years agoI have suffered from autoimmune illnesses for many years. Fortunately I received great help from Mayo and have been doing well for years now except for the occasional flare ups
Amy Martinez
5 years ago AUTHORI am glad you are doing well. Hopefully, the craziness of everything going on is not causing a flare-up for you.
Pauline Reynolds
5 years agoI can only imagine how frustrating. I’m going to say either Rocky Mountain Spotted Fever, Lyme Disease or Lupus.