What I Wish I'd Known When a Nurse Said My Aches and Pains Were 'Normal'

Remember how when you were a little kid and you had to go to the doctor every year for a checkup? (Well, as adults I think we are supposed to do this, too, but this took
place at one of those yearly checkups.) Your mom or dad goes with you, and you get asked about your hobbies, whether you wear sunscreen, a helmet and a seatbelt; they make sure you’re up to date on vaccines; and they check for any other “issues” like BMI, milestones, etc. This was one of those “normal” checkups. I was 8 and in the third grade. My mom was with me; she always took me to the doctor. The doctors were really nice, but the nurses were the ones who asked all those questions.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I don’t know what question she asked me to prompt this response or if it was just me trying to talk to her. I don’t remember my thought processes on that day (and I’ve always had difficulty expressing my thoughts into words), but I remember talking about pain. I remember saying something like, “My X hurts and my Y hurts and sometimes my Z hurts, too,” and she looked at me and said, “Honey, everybody gets aches and pains; that’s normal.”

And that is the phrase I have quite literally clung to as comfort for the past 12 years of my life.

This was all a routine conversation to everybody else in the room, and I’m sure she didn’t tell the doctor. Why would she need to? But it has stuck with me to this day.

Every time something would hurt (or heck, every time something just didn’t feel right), I wouldn’t tell my parents, and I would keep telling myself, “It’s OK, it’s normal.” It was my way of trying to stay grounded. I felt weird and I was anxious about it, but by telling myself it was “normal,” it provided some level of relief.

That same year in third grade, I started having chest pain. I told myself it was normal. When I was 14 and started having panic attacks, I told myself it was normal. When I was 20 and started having severe pain going up and down stairs, I told myself it was normal. I started telling myself I was just out of shape and needed to try harder.

I didn’t keep everything from my parents. They were really great, and when I broke my ankle, they took me to the doctor and religiously took me to physical therapy. When I had sinus infections all year for several years, they took me to the allergist and got me tested and got me allergy shots. When I had elbow pain for years (quite literally, from ninth grade until I was 19), they took me to countless doctors and physical therapists to try to figure out what was wrong. It took a while, but we eventually figured it out and had it fixed. That was the first time I remember not being in pain. I woke up from surgery in less pain than when I went in. It was eye-opening to think, “Wow, this is what healthy feels like!”

My parents always took care of whatever I needed if I told them something was wrong. That said, I didn’t tell them a lot of what else went on because I thought it was “normal.” Thinking back, I realize that chest pain as a kid isn’t normal, and the pain in my legs wasn’t normal and the fatigue wasn’t normal. The floaters in my eyes and panic attacks weren’t normal. The feeling of not caring about anything (when I got depressed) and not being able to focus wasn’t normal. At that point, I started to have self-esteem issues. I didn’t dislike myself, but I got frustrated and didn’t understand why other people could seem to focus and care more than I could make myself. I thought I really was just lazy like people said, that I needed to try harder.

I wonder what my life would have been like had I not held onto that one phrase. Maybe I could have gotten help, diagnoses and treatment sooner so I wouldn’t have progressed this far in my Ehlers-Danlos syndrome (EDS). Maybe I could have avoided all those things I shouldn’t have been doing, and I could still be doing what I love today. Maybe I could have learned to balance everything. But these are all things I’m learning now, when it’s almost too late. I think it’s never too late, but I feel like if I hadn’t thought I was “normal,” I may not be where I am today. I may be somewhere completely different.

If I could go back in time to the day that I decided to just accept my “fate” in life of hurting and feeling sick daily, there’s a few things I’d really like to tell myself: You’re not imagining it, you’re not faking it, you’re not lazy or a hypochondriac; what you feel is real, and it’s not normal. You need to tell your parents or whoever will listen, and don’t believe them when they tell you there’s nothing wrong. There are people who understand and feel the same thing; you are not alone.

At the end of the day, just remember you’re not imagining this and you’re not alone. This is real, and it’s happening to you, and there are some things that can be done to help prevent progression, so fight for yourself. Don’t be placated by people telling you it’s normal to have aches and pains, or that you should just push through the pain, or you should stop being so lazy and stop seeking attention. Those things are not the reality of your situation and as invalidating as it is for you to hear that, you have to not believe it. It will be hard, and there will be some times where you will break down and cry and wallow because people are making your life a lot harder than it has to be and you can’t just let it roll off your back, and that’s OK. It’s perfectly fine to have those days, but when you do, remember it’s real and there’s a whole community of people out there who will believe and understand you.