This is What an Invisible Illness Looks Like
The road to a diagnosis and gaining knowledge along the way
A Car Accident
I've always suffered from migraines. When I say always, I mean since I was about 17 and I was in a major car accident (I'm 46 now). I was sitting at a red light, the third car back from the crosswalk, when I noticed in my rear view mirror that the car coming up behind me was not slowing down. Being the inexperienced driver that I was at that time, I tensed up my body and braced for impact. The guy slammed the car he was driving into the rear of my car so hard that I pushed the car in front of me into the car in front of it, sending it into the intersection. (I later found out that the woman in the car in front of me was coming from physical therapy that should had just had done on her neck, from a previous accident that broke her neck). I had an intense migraine, immediately after impact. I got the horrible whiplash and a concussion. I remember crawling from the bed to the bathroom during that first week. I was so dizzy that standing would make me sick. I ended up with a permanent migraine disorder and chronic tension & migraine headaches due to neck and shoulder injuries.
Jump way ahead to about three years ago (26 years later). I started having a lot of strange new symptoms. If you've read my other articles, you're probably aware that I have some mental health issues that I've been dealing with since my youth. These mental health issues had me thinking that my new symptoms were probably just due to anxiety and a new relationship (maybe my fight or flight response was triggered). When my symptoms persisted, my instincts told me it was something more so, I went to my doctor.
Sometimes, (and not all medical experts are unreliable) doctors can get a little lazy. This is especially true if you keep coming in with problems and they're getting tired of you. And, even more so if you are like me and have a history of mental illness and a diagnosed migraine disorder. If I go to the doctor or hospital, they automatically go to those two diagnosis and want to treat me for that. This is why it's very important to get a second opinion if you don't feel like you're being taken seriously. In this particular instance, my doctor stated he felt like this was a side effect of a psych medicine that I had been on (for 2 years). I don't think so.
I Thought I Was Dying
I progressively got worse over the next few weeks. By this time, I had been vomiting every day for three weeks. I couldn't even hold down water. I couldn't get out of bed because I was so dizzy and in severe pain. went to the ER five times in one week, just for them to assume it was a migraine and treat me for that. That us until the fifth visit, they decided it was all in my head. They called in a psych nurse and tried to get me voluntarily commit myself to an inpatient mental health facility. I was so distraught at that point that I gave in. When the ER called to start the process, I was denied by the mental health facility because I was not depressed or suicidal (because it wasn't a mental health issue!). I went home and got back into bed for another week. I was sure I was probably going to die.
I woke up on a Saturday morning and had a new symptom; an earache! I went to Urgent Care, rather than the ER, and was diagnosed with a severe ear infection. After a month, I finally had a symptom of a problem in my ear! For over a month, I had an ear infection that was so severe it was causing pain throughout my sinuses, except in my ear. The doctors never bothered to check my ears because they went off of my past medical history. An infection that severe could have traveled through my bloodstream and killed me. I was lucky.
Since then, I have had chronic ear infections even causing my eardrum to rupture at one point. I have permanent damage to my eardrum.
What's Wrong With Me?
As of right now, I've been diagnosed with Fibromyalgia, Chronic Migraine Disorder and Chronic Fatigue Syndrome. I was even misdiagnosed with a Epilepsy and the diagnosing doctor tried to make me take a seizure medication that would be dangerous, if I did not have seizures. I demanded a second opinion from another doctor (which took a year to get) and he confirmed I had NO seizure activity. I knew I didn't. I'm glad I got that second opinion.
It turns out, I have severe allergies. The funny thing about allergies that we sometimes don't realize is that they can make you really sick. So sick that you have chronic vertigo and can't function. So sick that it causes chronic inflammation throughout your body and causes the eustachian tubes in your ears to completely close, causing you to have chronic ear infections. So severe, with symptoms so difficult to diagnose the cause of, that you start to believe it's all in your mind.
You Take The Good With The Bad
I have good days and bad days still. I underwent surgery recently on the worst eardrum and so far, it's been a little bit better (it's been less than 30 days). The migraines will never go away and haven't been responsive to any treatment so, I've learned to manage them on my own. The allergies are so bad that there is no treatment for them other than Immunotherapy, which scares me and may not work (or may cause me to go into anaphylaxis). There is no treatment for Fibromyalgia. I have to remember to rest and exercise, when I'm not in too much pain.
What's the point?
Sometimes, I look fine and I'm very productive. Other times, I look like death and can't get out of bed. Just because I am productive one day, doesn't mean I was faking being ill or am miraculously cured. It's just a "good" day. Try to remember that when you are talking to a friend who is sick often. Try not to judge them and do not give them advice. Just be there for them. Don't forget, just because someone looks fine doesn't mean they are. Not everyone has the same pain threshold either. So, be kind!
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