Three Years Since My AS Diagnosis

By Nicky-Flikas-aks

2 min read

You would think getting a diagnosis would have answered all the questions about what was going on in my body. The answers to questions like: What led me to be on sick leave for the third time? I wanted answers and a potion for a cure. A cure that would be able to get me back to the person I once was.

I wish it was that easy

I thought after leaving the rheumatologist's office, I would get a prescription and all my problems solved. Like I said, it was not that easy. I think a lot of it has to do with little information around about AS. I don't blame anyone who can't understand what it really means to have a chronic illness. Because if I didn't go through it, I think it would be hard to know as well. It wasn't until it happened to me. Now I am more educated on when I see someone going through what I am going through.

Back to leaving that doctor's office...

I honestly thought after all the fight I went through to find the right doctor, I would be listened to and understood. I was dismissed numerous times. I was told more than once that it was just anxiety and depression.

It's left a scar. It's left second guessing everything. At the end of the day, I know my body. As I know my body right now better than anyone. It was a relief finding a team of doctors that where able to listen at what I was saying. Finding the doctors to do the tests needed and work with me, not against me.

Even though being in that office, the day of diagnosis, was a relief in a way, it also brought tears in my eyes. I left with just a prescription in my hand to start taking, after many medications failed me. I still thought with the diagnosis I would be better. But it wasn't at all that way.

It's been three years since

Three full years of still feeling the same. Still trying to take one day at a time. Still trying to find new ways to help me live a better, happier life. A life where me and AS can be happy as best as we can be together. The difference between now and then is that I am much stronger mentally.

I have accepted that if I want to try and add things I once loved, I just have to do them a bit differently. I sometimes can't do the things I was able to before, it's okay. It's okay to change it up and make it the way it will work for me. Everyone's health journey will be different and won't look the same. As not every medication we will take, won't be a one size fits all.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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James Hollens Moderator & Contributor
Hey <inline-mention username="Nicky Flikas" user-id="2484107"/> , I really feel what you wrote here, with all the stress and pushing it took to get diagnosed I didn't realise that afterwards would be when the real challenge began! I love how you touched on not blaming others too much for not understanding. It took me a while to understand it myself and I was the one living it everyday, so I do try and cut people some slack a lot of the time (even if it can be ever so frustrating!). I'm glad to hear that you have found these new adjustments of making life easier and happier than before though and I hope that when your next diagnos-iversary comes around you will have even more tips and tricks to improve things! Sending love, James (Community Member)
LisaMichelle1092 Member
I wrote something remarkably similar to this a couple of weeks again with the psoriatic arthritis group though mine was my one year since diagnosis. We aren't totally sure if I have ax spa or psoriatic arthritis because my symptoms started in my back decades ago but going with family history, PsA is more likely. And honestly, the two diseases overlap so much I'm not sure it matters. Anyway, I thought all the same things. I thought taking a pill or a shot would calm everything down and then I could heal and be better. But like you said, it just doesn't work that way. Though I am somewhat better, I mean I'm functioning with 15 months ago I was not! And I was able to get through a couple of rounds of PT which has made me strong enough to join a gym and get a personal trainer. But each day is a toss up. I've now been through 5 different meds and am in the process of starting the sixth. So I see you and hear you. And we'll just keep doing this autoimmunity dance... together. All of us. You've got this. WE'VE got this.
1. Nicky Flikas Moderator
 <inline-mention username="LisaMichelle1092" user-id="6222695"/> Thank you so much for your comment. I can relate so much on not being able to do anything and slowly slowly getting a bit back of life. Sometimes we forget where we are coming from. Not being able to get out of bed and not being able to take a shower without pain getting in the way. I am so glad to hear how far you have come. It takes so much strength to do what you did. Like you said You got this. We got this. Hope you have a great weekend. Hugs, Nicky

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