No One Gets It...
So right now I am definitely (hopefully) in the peak of my condition. My AS has been super intense with flares and inflammation after the birth of my second son. I wasn’t sleeping, was extremely irritated and snappy constantly, plus moving with a lot of pain and limitation.
Then comes a diagnoses of a severe osteoporosis (I’m only 38), and the very scary and serious tone from every doctor I visit, on the importance of treating this now and avoiding further fractures (I’ve - cluelessly- got two spinal fractures).
Treatments and side effects
And when I thought injecting Humira was a big deal, I have to do daily injections of Forteo, a medication to treat the osteoporosis. On top of this, I have very serious damage in my hips (osteoarthritis?), and am limping on/off. I need to walk and exercise, build muscle tone and bone mass. But I also need to rest and stretch, it may take me minutes to get up from where I am sitting.
All of this happening while caring for a six year old and a fifteen month old toddler. The fear of the medication, the constant fatigue due to being on a low starch diet, and pressure to gain weight and mass.
And yet, no one gets it. No one cares maybe? I was told by the doctor I should consider hip replacement soon, within the next year. And when I share this with a close family member she says “oh well, maybe that’s a good thing, given you won’t have to take the medication any longer”. No, a hip replacement has nothing to do with the use of biologics. And no, its far from trivial to do this surgery, it IS a big deal.
So I’m left wondering, is it just me that find that no one really gets it or cares? If I had someone close accumulating conditions like me, undergoing such an intensive moment in life, I’d do my research. I’d be there with the right arguments and questions and thoughts. Or is that too much to ask?
How do others support you?
I wonder how it is with others, if you get not only the emotional support, but if you can count on your spouses and family members to think this through, treatment options and overall condition. If they make an effort to imagine what “stiffness” is like. Or if they know what it means to go to sleep dreading the night. Or the guilt of not resisting to a piece of bread and wondering what that weakness will cost.
Do they take any time putting themselves in our shoes? Or is this me putting on a show of self-pity?
I’m not sure, but it pretty lonely to go through this and face all those fears - as there are so many of them - when you realize they don’t really know what they’re talking about when saying “it’ll be fine!!!” If only these loved ones did their research, then I’d believe their comforting words. But not otherwise. No?
I guess this being my lifetime journey, I must simply find my path forward, even if alone.
Do you use the word disability to describe your AS?