I’ve had generalized anxiety for as long as I can remember. It defined me for most of my life. But, in the past few years, I have come out of isolation and finally started TALKING and sharing things I had never shared before. Would people actually understand? Relate? Care? YES.
The definition for Illness anxiety disorder is:
“Illness anxiety disorder, sometimes called hypochondriasis or health anxiety, is worrying excessively that you are or may become seriously ill. You may have no physical symptoms. Or you may believe that normal body sensations or minor symptoms are signs of severe illness, even though a thorough medical exam doesn't reveal a serious medical condition.” - The Mayo Clinic
These are not attention-seeking fears that people talk about. They are REAL fears that cause distress to so many. It’s exhausting. Many people with illness anxiety might go to the doctor to get tests quite often because they are convinced something is wrong with them. They might have irrational thoughts that lead them to believe the worst possible outcome. Every person has a different case and the severity/situation is completely different. I won’t pretend I am an expert on this – in fact, I am quite new.
My story is a little different. Mine started with passing out after I got a shot, or a bad experience. Okay…several bad experiences combined with generalized anxiety disorder, panic attacks, phobias, PTSD and trauma that developed over-time which caused me to FEAR everything medical. Maybe you can relate? This has been a huge source of trauma and crippling fear. I have spent years *trying* to explain this to family & friends, often feeling misunderstood & lonely, but I am refusing to let “it” take control of how I live. If you have read my blog posts for a while, you have probably gathered by now that I have a form of Illness Anxiety, but I called it Medical Anxiety, a term you don’t hear very often. It was a term I didn’t know existed until recently. I often refer to anxiety a lot, but the root of a big portion of mine is medical related, and subconsciously, I think it comes down to the fear of dying. It took me a long time to actually say that out loud.
It started when I was little, around the age of 8.
I remember going to the doctor – I was usually scared to get a shot, like most kids, the fear of pain in general - I think most parents believe their kids will grow out of this stage. The first time I remember passing out was when I was getting a flu shot. It was maybe 5 minutes after. But, a lot of people pass out after shots. Normal, right? I was just standing there, waiting to leave while my mom was talking and I was hanging on her leg, and suddenly, I fell to the ground. They called an ambulance because they didn’t know what was wrong. Sure enough, I was fine. During my childhood, elementary school & middle school specifically – was when the fear of abandonment was evident, and I clung hard to my mom as my “safe person.” Sleepovers with friends, the fear of not being able to go to sleep, being alone, and panic attacks were all too real. My first panic attack – non-medical related, but it had a very physical impact on my body – was Y2K. Everyone wouldn’t stop talking about it! I read all the “Left Behind” books – the series about the Rapture in the Bible and people vanishing on the earth to go be with the Lord and the unbelievers staying on the earth while Satan took over – the book of Revelation. As a kid, these books and this movie affected me to my core and I was terrified of what was going to happen on Y2K. We were headed to Gatlinburg, Tennessee, for a family reunion, and I thought everyone was going to disappear and go to heaven and I was scared I would not be saved and that I would be left behind. Was I really saved? Would I die? HOW would I die? Midnight came and went, nobody disappeared, but I couldn’t shake the feeling I had. The panic attack creeped in when we all went to bed, even though I was still there. My legs started shaking uncontrollably, and I was so panicked. I was terrified. The panic attack felt like I was dying, I felt completely out of control of my body, completely helpless. My parents had no idea what was going on. Then it began, the fear of the fear, the vicious cycle – I started to associate panic attacks with vacations. As with medical events, I started to associate doctors, needles, passing out, and panic attacks with dying. I guess you could say this is when it all began.
In 7th grade, I was supposed to have my birth mark removed from the back of my leg. I knew this was a “big deal.” I was all prepped and ready to go in the hospital, but I KNEW I would be asleep and would feel NONE of it. I had already been diagnosed with generalized anxiety by this point, and it crept into every area. Before we started, the doctor told me he wanted to give me an “extra” shot, a “numbing” shot before the actual IV (2 shots? – wait, why would a kid want TWO shots when someone is scared of needles?). I passed out in the hospital bed from the numbing shot and the doctor said it looked like I had had a seizure. I woke up with everyone around me, looking very concerned, asking me a lot of questions. We decided not to go through with the surgery, even though he said I was probably okay. NO THANKS.
I had to get several more shots over the years, and I asked one nurse if I could lie down since I did not want to pass out. The nurse looked at me like I was silly and made me feel bad for even asking, so I sat up and guess what happened? I passed out. I always hated the smell of ammonia when I woke up. I didn’t understand why it kept happening.
What was wrong with me?
I had no problem going to the dentist – I had no cavities growing up. I had no other major health issues, other than anxiety. It was during high school that I had my first ovarian cyst and was in quite a bit of pain. I went to the OBGYN for the first time (I HAD TO) to get some medication, and just by description, the doctor knew what was going on. He could feel it externally and had told my mom that’s all he was going to do but decided in the exam room he wanted to be positive, so there was an internal exam done. I had no idea what was happening, I was just in A LOT of pain. Next thing I knew, I woke up and I had passed out and gone to the bathroom on myself. Again, the doctor and nurse said it looked like a seizure and everyone was very concerned. We decided to go see my regular doctor to discuss what happened. Another appointment. This time I was extremely anxious.
What was wrong with me? Why wasn’t I normal?
I was angry & terrified – angry that I couldn’t just be normal at the doctor, but also angry that this doctor didn’t just do what he said he was going to do. So, I started telling my regular doctor about what happened at the GYNO, but…I couldn’t. I started sweating, I started getting dizzy…. I almost passed out and had to lay down. My mom had to finish the story. He was explaining that I could’ve passed out due to stress – that sometimes passing out can look like seizures, but they are not – they are just stress induced. He recommended we get some tests done- (ME “WHAT, MORE TESTS?! MORE DOCTORS? NO WAY. NOT AGAIN. I CAN’T DO THIS ANYMORE. EVER!”). We started walking to the car and I had this thought. I thought “I can never talk about this stuff again, or it will trigger me to pass out;” “I have to stay away;” “why can’t I be normal;” and all of my thoughts started spiraling out of control. I developed PTSD from that gynecologist appointment and wouldn’t even step foot in one for another 4 years but wouldn’t have an actual exam for a year after that. The thought of dying entered my mind – I associated passing out with dying. I have been afraid that I wouldn’t wake up.
I started to fear the worst in every situation. If I felt sick, or had pains, I was convinced something was terribly wrong with me – I thought I was going to have to have surgery. I would have a tumor. I would get sick and die. My mom always had to talk me off the ledge when I called her explaining my symptoms, and sure enough she was always right. I didn’t want to go to the doctor, I was convinced it would always be bad news. Was it the pain? The doctor’s office? The abandonment? Was I saved? Would I go to heaven? Would I die a slow and painful death? HOW would I die?
This medical fears bled into every area of my life. I associated that one appointment with every single thing medical starting my senior year of high school. My world became incredibly small, and I wouldn’t even step foot inside my new psychiatrist’s office to get the medication I needed. When I finally did, I was kicking, screaming, and BEGGING my mom for a way out. CRYING. I knew I would pass out, I knew something bad would happen. When I finally did get medication, I was living but avoiding therapy for years. I couldn’t talk about it without being extremely anxious. Certain things still make me anxious to talk about.
The next years were filled with canceling & rescheduling TONS of appointments and filling my time with the most current boyfriend and musical theatre. I didn’t talk to anyone about my issues. I started talking to my mom first, but she was the only one. I actually didn’t believe anyone at therapy could be helpful. I was scared to talk about it, remember? It would only make me anxious to talk about it, which put off any healing for YEARS. It wasn’t until years later that I was relaxed enough to even go but still felt limited on certain topics. I didn’t even know how to articulate these thoughts and feelings myself until much later, so it was a part of me that stayed hidden. Other people thought I was on top of the world, happy as can be, but a part of me felt crippled & misunderstood. After a lot of prayer, years of growth and maturity and because I had NO choice, I started taking baby steps with these medical fears. TINY steps. But let me tell you, each one was an “EVENT” for me. Eventually, I HAD to go to the doctor for one reason or another. I HAD to go to the dentist. They were NOT fun days, for the doctor, or for me. But, I had to tell them up front what I was comfortable with at that time. I was emotional, I was anxious, my blood pressure was abnormally high, when in reality, it runs pretty low, etc. Thankfully, the Lord has blessed me with gracious and understanding doctors over the years who have been compassionate. I had to start going to the psychiatrist every 3 months for checkups and medication refills. I was finally able to go in the room – tiny victory. My mom went with me to that doctor and to almost every single doctor’s appointment I have had these past 15 years. Not as much anymore, but on occasion, I have someone there. Dental cleanings were next. I finally went only for them to find the first cavity ever! Of course. But, I survived. Baby steps.
I got sick. I HAD to go to the doctor. I NEEDED medication. My mom would always say, “They are just going to talk to you. You are SAFE.” But, I HATED them taking my blood pressure. Anything that involved doctor's touching me, something unknown, or something that would cause pain. My mom always encouraged me with bible verses and prayed with me. It always helped. I had to get up to date on my vaccinations, and it was a miracle because I laid down with my legs up and didn’t pass out! And, I went to see a new OBGYN several times just to talk to her. She explained what she would do and showed me everything. She knew I was petrified. I am so thankful there are doctors out there who were kind. Although I still go to these appointments and get anxious – I GO.
We finally got a diagnosis for my fainting episodes – Vasovagal Syncope. Definition: “occurs when you faint because your body overreacts to certain triggers, such as the sight of blood or extreme emotional distress. It may also be called neurocardiogenic syncope. The vasovagal syncope trigger causes your heart rate and blood pressure to drop suddenly.” – Mayo Clinic
It all made sense now. Although everyone varies with their own diagnosis, I am just more prone to it! Now, when I go into doctors, I ask someone to lift my legs while getting an injection. Or, I must lean all the way back so the blood stays in the back of my head. Another trick I just learned from an EMT who drew my blood is to have someone hold an alcohol swab right below the nose if you are feeling like you are going to pass out. I am not in as much emotional distress as I have been in the past, but this also has come with having positive experiences and realizing that I AM SAFE. Whenever I have to do NEW things – it’s a different story. I like to be in control and be prepared. That’s when I have to put my trust in the Lord.
I have taken steps towards healing with the help from my family, courage from the Lord, and through maturing and understanding which is why I have been so afraid for so many years. I have had baby steps and tiny victories, but each one counts. They still do. Anxiety still exists in other areas of my life (you bet it does), but the Lord has shown up in amazing ways. It is NOT easy, and I would be lying if I said I still feel misunderstood and lonely in these struggles as adult. But, the Lord has given me so much compassion towards others in general because of my struggles, and if anything, he keeps breaking me down more and more and showing me that I need to depend on HIM above all else. I am NOT a victim, but He is the ultimate Healer! I have come such a long way and as long as I keep taking tiny steps, trusting in Him, and with the support of those around me, this will all get better. And, like my mom has said many times, I am SAFE. My feelings are valid and real, but I am safe!
I still have moments of fear. I still have to put things in perspective and I still have to take it one day at a time. Since all of this has happened, I have successfully had 4 root canals (I know…4!), gone to the doctor multiple times, I see the dentist and other doctors by myself. I still have bad associations and I am now back in therapy – which I think has been the missing piece. So much of this was because I struggled in silence and stayed hidden. I still have the same triggers, but I respond a little differently. I think it is something we can still bring awareness too and I am so thankful for where I am today.
Thank you for reading!