You Are Valid!

Living with AxSpA is a daily fight, and yet on top of this we are expected to fight for ourselves as patients and humans. Doubt, misdiagnosis, and getting taken seriously are all things that we struggle with in our daily lives.

Doctors question our validity.

Family questions our validity.

Supervisors question our validity.

And finally, we question our own validity.

Even though our condition is mostly invisible, we need to fight to be seen. We need to remind everyone that we are valid!

Doctors

For most of us, getting to be seen by a doctor was one of the hardest steps. Yes, getting into the office might have been a challenge, but I mean Getting Seen! When a doctor looks at you, takes your concerns seriously, and gives you the proper diagnosis. What a wonderful, validating moment that is!

When it actually happens. Unfortunately for far too many Spondys, there were months and years of being ignored and misdiagnosed. Because nothing showed up on an x-ray or MRI we were told it was fibromyalgia or, even worse, all in our heads.

We knew something was seriously wrong. We went to the doctor. We paid our co-pay, and we were told nothing was wrong. How horrible is that? Especially when years down the road we are finally given a diagnosis of AxSpA, and could have been receiving proper treatment.

(If you are someone who is undiagnosed and having trouble getting your doctor to take you seriously. Read about AxSpA, write down your symptoms, and demand to be taken seriously)

Clouded judgment

For those who have their AxSpA diagnosis, there is another issue that I'm sure a few of us run into. When something else feels wrong. It doesn’t feel like AS, and you are concerned about a secondary diagnosis. You tell your doctor what’s going on, and they respond with:

“Well, it could just be your AS.”

This happens way too much to me. I'm feeling physically and mentally drained more than usual...“It could be AS.” My heart feels like it’s working harder than it should...“It could be AS.” I can’t sleep and have been waking up in cold sweats...“It could be AS.”

Or one of the medications that we take.

We all have such a huge and wide reaching condition, that if anything goes wrong, it very well could be AS.

AS clouds the vision of our doctors to the point that not only can’t they see what else is going on, they sometimes don’t even want to look.

Family

A family is a team where everyone is supposed to work together. Your average family member wakes up, does hours or projects and chores, and still has enough energy that night to have a family game night or go out with friends.

We, on the other hand, sometimes wake up...And that’s about all we have the energy for. We then end up playing the role of the anchor, dragging everyone else down, or we are ignored all together. Either role we play, it can be very invalidating.

This makes us feel emotions like guilt, anger, depression...Or, in order to prove ourselves, we push through our pain and exhaustion which makes us feel even worse the next day.

Co-existing with family (or really anyone) can be very difficult when you feel you have enough trouble simply existing. But, don’t let this fact make you feel any less valid as a family member. You are valid, and your worth should not be based on how much you can get done in a day.

Supervisors

Much like with our families, at our jobs we are expected to perform as part of a team. Some of us have the most perfect and accommodating jobs for our physical condition. But, for some patients the needs of our jobs seem like they are more important than the needs of our bodies.

Whether or not to be “out” with our disabilities at work is a very personal choice. A lot of factors determine whether we should share our health concerns with our co-workers and supervisors.

But, if the duties at your job become too much to handle, you need to do something about it. The Americans with Disabilities Act (ADA) was created to provide assistance to people like us. All you need to do is contact HR and inform them of where you are struggling and what would be helpful.

Your concerns at work are valid, and under no circumstances should you push beyond your comfort level when, with accommodations, you can complete your tasks in a better way. Remember, work smarter, not harder.

You are valid!

Axial spondyloarthritis is nothing to be ashamed of, and it does not make you less of a member of society.

Yes, we often feel like we are less valid because we have difficulty being seen and heard at our appointments, with our family, or at work.

Try to remember that no matter the situation...You Are Valid!

Stand up and let your voice be heard.