I will never forget the first time someone told me my symptoms were in my head. I was so shocked and taken aback. The thought had never once crossed my mind that someone would even think I was making up my symptoms. The sad thing was, it came from one of my peers. Someone I trusted, and learned from. It was the biggest betrayal I have ever felt in my life.
At the time, I was in college at LSU ready to head into my senior year. I was working at a physical therapy clinic, loved my job, loved my major, and was looking forward to the next chapter life had in store for me. However, there was this one thing holding me back. This dang chronic illness. I had been on every type of medication known to treat my autoimmune disease, and nothing was helping my raging uveitis.
Remicade Gone Wrong
I drove an hour plus to New Orleans every 6 weeks to have a 4 hour Remicade infusion. This was the first time I had any type of infusion medication before. During my first dose, I had an allergic reaction, but nothing high doses of Benadryl couldn’t fix. After my second or third infusion I began to have terrible symptoms. I had severe joint pain in my knees and ankles. This had NEVER happened to me before.
I was hobbling around LSU, which is a pretty big campus. Random people would literally stop me and ask if I was okay. One time some kind student stopped to pray over my feet. Another time, a maintenance worker offered to bring me to class in his golf cart. I was so thankful that day! Being that I worked in a PT clinic at the time, I asked the PTs to try every modality, manipulation, and taping mechanism they could think of. Unfortunately, nothing was long lasting.
The Crippling Words…
On my off day, I went in to have my ankle taped for stability, because I had to walk a lot the next day. And that is the first time I had heard those most hurtful words, “Are you sure it isn’t just all in your head?” I was meek, mild, and shy then, but I was also just in complete shock. I wanted to say, “you think I am doing this for attention? You think I hobble around on for fun?”
I feel like ever since that moment, I have been afraid some medical professional wouldn’t believe me or think I am crazy. It is an interesting perspective to be on both sides of the spectrum, as the patient and the provider. I used to treat patients with chronic pain and chronic disease. I know the stigma that can surround them in the healthcare world. But also as a patient, you want someone, anyone to believe what you are telling them. That you are not crazy!
I’ve come a long way in my journey. I think it took advocating for Renee that made me find my own voice in my medical journey. I used to leave out information for fear that it would make me sound crazy. Before my next visit, I would narrow down which symptoms or problems were my most pertinent so I wouldn’t be listing a million problems just to get lost and ignored. I also thought I was invincible and nothing bad could ever happen to me.
Just Because It Is Invisible, Doesn’t Mean It’s Irrelevant
The most dangerous part of living with an invisible illness is that exactly that – it is invisible. I looked perfectly normal on the outside. I would hide some of my symptoms on the inside and just push through. Looking back now, I think me looking “normal” made my symptoms and the possibility of severe symptoms dismissive.
I remember people would tell me “you look so skinny, you look so good” or a nurse would tell me “I wished I weighed that” after getting off the scale. I would just smile and move on. In reality, I was the sickest I had ever been and actually terrified because no one could figure out what was wrong with me. But on the outside I looked like the perfect picture of health.
My invisible illness lived on for 3 years before almost killing me. Looking back now, there are so many clear signs I had pulmonary hypertension. No one ever followed through with it. I’ve said this before, you google it and it is pretty freaking scary. I probably looked it up back then, but that was worst case scenario type stuff. Remember, I thought I was invincible.
Why Didn’t I Push Harder?
During this same exacerbation of bizarre symptoms, I was also being screened for blood cancer, seeing a hematologist every 2 weeks, and getting a bone marrow biopsy done. That was in the forefront and had my attention more than anything. However, at the same time it is not my responsibility to come up with the diagnosis. I just have to do my best to advocate for myself, share my symptoms, and trust my medical team.
Every time I meet a new resident before my visit, I have been told time and again I have the best doctors. I mean, I work in healthcare, I do my research before picking my providers. I trusted everyone on my team, but at the same time felt SO LET DOWN.
Hindsight is 20/20
My case is wild and unusual, so whenever I meet new providers a lot of back pedaling and chart reviewing is done. I had an exercise test performed a few years ago, and it was recently brought back to light. This time, I had seen the results from the medical provider point of view vs the patient released results. I saw a note that my cardiologist had suggested a right heart cath should be considered. THREE YEARS AGO. Why is this significant? A right heart cath is the GOLD STANDARD for diagnosing pulmonary hypertension.
I was in the middle of pulmonary rehab when I found this out, and had ALL OF THE FEELINGS. All of the signs were clear as day that I had pulmonary hypertension. However, back then it was clear as mud. It is so difficult to come to terms with. My life would have changed DRASTICALLY had I been diagnosed 3 years sooner. But would I have wanted it to?
I always liked to say “everything happens for a reason” but this one I’m really struggling with. It is so easy to be SO ANGRY and letdown. But at the same time, had I known I had pulmonary hypertension 3 years ago, Renee would have never been in my life. So how can I chose? I got to have her, but I also had to lose her.
I still have lots of questions. There is something incredibly unique about me. I feel like it’s a matter of time and technology before I have more answers. If it is even still relevant by then.
I Hear You, I See You
Thanks for hanging around if you made it this far! What I am trying to say is hindsight is 20/20. Focus on moving forward and what you can control. Be honest with yourself, and be honest with your doctors. Don’t be afraid to seek out a second, even third opinion. Find someone who believes you and believes in you. I certainly do. You have to put yourself first, because eventually your body will make you.