This post is a little different, and a little personal. I’m going to share a bit of my medical struggles I’ve been facing because I feel like people truly need this advice.
I am 24 years old, and I started having severe back pain when I was 19. I was raised in a “put some dirt on it” family, so I ignored it as long as I could and let everyone tell me that I couldn’t have a serious back problem because I was only 19. “You’re so young, you don’t have arthritis.” “You’re probably just sore.” “Take some ibuprofen.”
I listened. I ignored it as much as I could. I took Aleve, Ibuprofen, I stretched, I took hot baths, whatever I could to get through the day. And that’s what I did until one day, I was riding in the car with my parents for a drive that was about an hour long. I remember sitting in the back seat and freaking out that I just “threw out” my back, and my pelvis felt detached from my lower spine. I was SOBBING. My parents didn’t know what to do, so we went to the emergency room.
This was definitely a bad idea in retrospect. I had a terrible doctor treat me in the ER, who ordered X-rays of my lower back, but before the X-rays came back, he thought it would be a grand idea to flip me over and examine my back, and without my consent, he yanked my leg up and put all his weight on my lower back to “pop it back in” because my “lower spine had popped out of place.”
I could have had a fracture or something seriously wrong on the x-ray, but he did this before seeing them. THE PAIN. Oh my god, I sobbed so hard in that ER rolling bed that I remember thinking he just broke my back, because I couldn’t breathe.
Flash forward about half an hour later, when he actually saw my x-ray results. He told me everything was fine, nothing came back from the x-rays, and prescribed a muscle relaxer and told me I was just stressed.
Obviously, I wasn’t pleased with this treatment, so as soon as I could get in, I went to my primary care physician and had the x-rays sent over to her. It was here that I found out the ER doctor who told me everything was fine, actually found degenerative changes and mild arthritis on my lower spine and didn’t bother to tell me (probably because he had just shoved my back around while telling me I was “just sore”). So here I sit, in my PCP’s office, while she sits in a chair telling me that she doesn’t understand why I’m crying, and that mild arthritis wouldn’t cause any pain like what I’m feeling. So again, she chalked it up to soreness – didn’t even get up from her chair to look at my back or examine it.
I asked her, “so what do I do for the arthritis?” She told me to take some Aleve and I would be fine. I told her I had already been taking Aleve and it wasn’t helping. She STRAIGHT UP TOLD ME that she couldn’t do anything else for me. So I asked, “well isn’t arthritis like a permanent thing? What do I do long-term?” And she tells me, “you’ll probably be taking Aleve for the rest of your life. That’s it. That’s all you can do.”
Again, obviously, I was not pleased with this appointment. But, I let her convince me that I was being dramatic. That I only had mild arthritis and I should suck it up. I was just sore. I was just stressed. Take some Aleve and get over it.
I dealt with this for a few years, along with chronic fatigue and other weird things going on. Right before my 21st birthday, I had something strange happen. I found a lymph node in my neck that was rock hard and swollen. I remember that moment so clearly. I was sitting in my mock trial coach’s constitutional law class, in the back of the room, and discovered it. I immediately felt my stomach drop because I always think the worst – so right away, I was like “oh my god, I have cancer. I have lymphoma.” I grabbed my laptop and backpack and left in the middle of class and drove straight to immediate care.
I won’t get into those details – because obviously immediate care didn’t do anything for me but tell me to see a doctor. I’ll summarize this briefly – I had an ultrasound. Wasn’t looking good. Had a CT scan. Wasn’t looking good. Had a needle biopsy to test for cancer. This test would be determinative. It wasn’t – and it wasn’t looking good. Had surgery to remove and test the node for cancer. This process went on for two months. Two months of bad news, and thinking I could very well have cancer. Two months of my now-husband being in denial. Two months of my poor mom trying to stay positive. Two months over-thinking about how my life could change, how I wouldn’t be going to law school that fall, how it was going to affect everyone around me…
Negative. The test, thank God, came back negative for lymphoma. I never in my life have felt relief like that. I ran to my car and sobbed. But…. The next day, I realized I hadn’t gotten an answer for WHY. Like, don’t get me wrong, I was SO HAPPY I didn’t have lymphoma, or Castleman’s Disease, or any other problem they tested for… But I didn’t get an answer for why this lymph node was blocked, swollen, large and rock-hard. When I contacted the specialist who did both my biopsies, he said they didn’t know.
So I moved on with life and didn’t think about it much once I was recovered from surgery. Then I found out I had Celiac Disease.
If you don’t know, Celiac Disease is an autoimmune disease where your immune system basically freaks out upon contact with gluten, and attacks the tissues of the body. Basically, the molecular makeup of gluten is so similar to certain tissues in the body, like the lining of your lower intestines, that as the body attacks the gluten as a “threat,” it accidentally attacks the lining of your organs, especially the lower intestines, thinking it too, is a threat.
As with all autoimmune diseases, when you have one, you probably have another. But, my doctors at my university’s Health Services weren’t that great, and when I went in for concerns about autoimmune issues, I got no help.
Flash forward again, and my back problems came back with a vengeance. I had multiple x-rays done. Mild arthritis. I was referred to a specialist and had an MRI done. Mild arthritis. I was sent to Physical Therapy. My back problems got worse. “You’re just sore.” “It’s just muscular.” “Mild arthritis wouldn’t be causing this pain.” “Just stretch more.” “Take ibuprofen.”
More and more of the same.
So I ignored it. I ignored my body screaming for help. I ignored my body when my hair started falling out. I ignored my body when every other joint in my body started to feel like the tin man from the Wizard of Oz before Dorothy oiled up his creaky joints. I ignored the signs of nerve damage. I ignored the headaches. I ignored my chronic fatigue that demands I sleep 10-12 hours a day to feel “normal.” I ignored the debilitating pain every time it was going to rain. I ignored everything, because I had been told so many times that I was being dramatic and that there was nothing wrong with me. I didn’t want to pay more and more money for doctors to keep telling me to take ibuprofen and deal with it. I gave up and told myself “you’re just going to have to live this way.”
Then my teeth started breaking, and I woke up one day screaming that I couldn’t use my arms, and it felt like my bones had migraines. So, I started researching. I was worried I had another autoimmune disease flying under the radar. I started learning as much as I could about autoimmune diseases that involve severe joint pain. I started learning about Rheumatoid Arthritis and Lupus. And then, I went to a new doctor to try again.
Only then, after I did my own research of all of my symptoms, and read multiple “feeds” of people posting about living with multiple joint autoimmune diseases – did I find a doctor who listened to me. I pulled out my sheet of notebook paper that I wrote all my medical problems and the things I suspected were wrong with me. I read it all to her, knowing full well she was probably annoyed that I was “self-diagnosing” using the internet. I did it anyway, because I needed to. And, to my surprise, she listened. She ordered tons of blood tests to see if I would set off any autoimmune indicators or rheumatoid markers.
Finally, five years later, I found out that I have some sort of connective tissue autoimmune disease. We’re not sure which kind yet, but I’m being sent to a specialist to narrow it down between RA, lupus, etc. And still, since I got those results, I’ve been doing deep, DEEP research into the depths of google, preparing to help this doctor – and myself – as much as I can.
Why did I just have you read all this?? Because I lived FIVE YEARS in pain. FIVE YEARS I went undiagnosed because I wasn’t fighting for my health. I wasn’t fighting for the answers I deserved. I was rolling over and letting doctors tell me I was dramatic and nothing was wrong with me because that’s what we’re supposed to do. We’re not supposed to google our symptoms. We’re not supposed to tell doctors what to do. We’re not supposed to tell them what tests we need. We’re not supposed to argue. They know best.
This is not at all a bashing of doctors. This is a mere recounting of the bad doctors that I’ve had, and this is massive criticism of MYSELF for not being my own health advocate. There are bad doctors out there, just like there are bad lawyers, bad police officers, bad teachers, etc. The point is, you need to be your own health advocate, because YOU, and ONLY YOU, know how you’re feeling. NO DOCTOR knows the pain you’re feeling, or the weird symptoms you’re having that you chalk up to be “nothing.” You have to help doctors for them to help you. And sometimes, you have to be stubborn.
Here are five MAJOR things you need to do to be your own health advocate:
- Trust Yourself
Don’t let anyone, family, doctors, friends – tell you how YOU’RE feeling. If you feel like you’re not getting answers, and you feel like something “just isn’t right” with your health – listen to yourself! I said it a few lines ago, and I’ll say it again. You and ONLY YOU know how you’re feeling. Even if you have the best doctor in the world, they can’t feel what you’re feeling in your body. Trust your instincts, and listen to your body, even when people are telling you you’re wrong.
- Do Your Own Research
When I say this, I am NOT talking about going online and doing a quick WebMD search and concluding you have cancer (we are all guilty of this). I am talking about DEEP in the depths of the googlesphere research. I’m talking about joining forums where people talk about health issues you think you might have. I’m talking about hours of reading multiple articles from several sources. I’m talking about reading complicated health journals written for doctors. Research, research and RESEARCH.
- Don’t Take No for an Answer
If you feel like you need a test done, and you’re getting a no from your doctor, or being told that it’s unnecessary, PUSH. If a doctor tells you there’s nothing wrong with you, PUSH. If you don’t feel right, and you’re getting “no, no, no” – change doctors. Get a second opinion. Post on facebook looking for recommendations on specialists. If you have a PPO, go to them. If not, demand that your PCP refer you to the specialist you want to see. Do not take no for an answer – this is your body, your life, and no one cares about it like you do.
- Be Involved Even When You Feel Annoying
When your busy doctor is reading you your test results, ask questions. Ask what an EO% is. Ask why you might have low blood pressure. Ask questions until you’re satisfied. They are making bank off of your appointment – don’t let them shoo you out leaving you with a million questions.
- Be Persistent Until You’re Satisfied
This kind of ties in with number three, but this is more of a “reach your end goal” point. For me, it took five years to get some kind of answer. Why? One, because the bad doctors I had. And two, because I wasn’t persistent enough. I gave up on myself and ignored my problems again and again until I reached another breaking point and would see a doctor again. I wasn’t persistent in reaching for answers, and I let people tell me I was dramatic and nothing was wrong with me. Be persistent, and don’t make the same mistakes as me – push and push and push until you get an end-answer that you’re satisfied with.
WOW. This is definitely my longest post to-date, and I feel so good getting this all out there. I hope this helps at least one person get closer to solving their daily health issues that they put on the back-burner. Have any of you been through a similar experience? Are you currently going through a similar experience? Comment below – I’d love to chat with you!