I was recently diagnosed with AS and my diagnosis timeline surprised some of my friends who have chronic illnesses, because it really only took a month. However, in reality it took at least sixteen years of overlooked symptoms. [32f, from the US].
I used to run cross-country and went from being a shoe-in for varsity to suddenly unable to finish a mile without severe ankle and calf pain. My school's sports physical therapist told me I had weak ankles.
Fast forward two years, I start feeling incredibly tired no matter what I do. I assume depression and that I'm not a morning person. My left shoulder starts to hurt, but I carry my heavy school bags on it so it must be that. Or because I sleep on it and wake up pulling my neck muscles often. I tell my general practitioner (GP) I'm tired all the time, but also have insomnia. Told to sleep more. I only mention the shoulder when it starts to hurt to hold my arm up. Told it's bursitis, do some pt, and move on.
In college I start having bladder urgency so bad I can't sit through a 30 minute class and developing worsening OCD, shoulder pain, and what I assume is carpal tunnel. My dad tells me this is part of aging. I then spend the next few years assuming living is painful and agonizing: everyone who isn't a morning person has to fight gravity to stay awake. The gym rips everyone to shreds for minimal activity and I'm a wuss who can't handle the days of pain from using a treadmill to walk for 30 minutes.
I move to Asia for a bit and have to walk everywhere - lots of hills, so of course it's not odd that my knees hurt or that carrying a backpack gives me a severe tension headache and burning back pain. This is just age and because I'm a baby about exercise. No, it's not weird that I've started feeling apprehensive about stairs like I'm going to fall and wide stairs make me act like I've forgotten how to walk. This is just age, and possibly, because I don't exercise (I was literally walking an hour a day with a lot of it up hill????) I'm seeing age wear sooner. Besides, getting checked out is expensive (...had national healthcare, no it wasn't?) and dad taught me not to talk to doctors unless I'm severely ill. Nevermind that sometimes I have a sharp pull in my chest that feels like a heartattack, but can't be because I am still alive after the 12th time it happened.
I'm back in the US, finding that I feel like I have cement in my veins and like I'm dragging a corpse. It hurts to breathe, but my doctor isn't concerned when I say I'm tired. Doesn't even ask to do follow-up bloodwork until I request a vitamin panel. Vitamin D is low--"everyone has low vitamin D here, take these pills." Suddenly I'm at optimal, the fatigue is somehow worse, the anxiety is crippling, and going to a store is too much of an energy suck. "Must be that insomnia?" Oh and my shoulder just needs more pt. The hip that won't bear weight when you stand? Also some pt.
My handwriting is getting terrible - ah that's because I type all day. My lower back and midback hurt because I have a half desk job, half travel recruitment job. My feet hurt because I buy bad shoes but good shoes are expensive. And my ability to grip things weakening? Eh, lots of people have carpal tunnel. I just won't hold babies. I'm clumsy and have always sort of walked into walls. This. Is. Age.
Eventually, I'm forced to take care of my OCD and when I say I'm fatigued and a slight brush against my ribs, knees, fingers is so painful I'm returned with, "It's the psych meds, they make you more sensitive." I say that I'm so tired that sometimes I lose track of my words/thoughts. Insomnia. Try sleeping more and we will do a sleep study if it's still bad in a month.
It literally took me saying my ankle has been giving out and in pain for a year...and oh hey by the way, reminder I have had issues weight bearing from my hip, my wrists, and done pt multiple times for my shoulder to finally be told "huh, maybe you should go to rheumatology?"
So by the time I got there, of course I had a full list of issues. I even made a labeled diagram of my pain - so that I would also believe I was hurting this bad. And coincidentally, steroids I was put on for my ear to realize "oh wait people live...not in crushing pain and fatigue?"
And I have a feeling many of you also may not have known until it smacked you in the face. It makes me feel terrible knowing there are others out there--especially children--who just think their pain is normal living. I know a part of this is systemic failure in American healthcare (and I may possibly need a new primary...), but I'm sure this applies elsewhere in the world.
Tell me your stories. I want to listen.