An Open Letter to Newly Diagnosed Ankylosing Spondylitis Patients

Dear newly diagnosed friend,

You are now inducted into the ankylosing spondylitis (AS) society. Welcome.

You didn’t ask for this and likely have no idea what its perks (or dues) might be. Nonetheless, you are here and so are we — we’re in it together.

You probably had a long, proverbial journey that included sleepless nights, confusing pain, and doctors’ appointments that prompted more questions than answers. Maybe you’re relieved that you’re here, because now you know what’s been happening to you for years. Don’t worry, it makes sense!

No one wants to chase a mystery illness for years, and we know that happens. AS can be a mystery for so long, especially to women, who are chronically underdiagnosed and often receive delayed diagnoses.

You will have bad days. Really bad days. Days when you feel alone, invisible, unsupported, and like a freak. When everyone around you is mobile, active, and not needing a nap (gasp!), you might feel creaky, cranky, and exhausted. This is normal.

You are not broken, unworthy, invisible, or like the “Other.” You’re you — just with AS.

People across the world live with chronic illness, and it takes a toll on all of us. It’s hard to feel normal when chronic illness isn’t yet normalized, so we naturally feel weird or different. We’re not. By existing and being you, you represent a demographic of society that needs to be represented.

I want you to know that you also will have great days with energy, low pain levels, and mobility. Days when you seem to forget that you have this disease at all. You will feel hopeful and energetic. Maybe you’ll need to nap the next day, but these days will come.

Your management of AS will be different than someone else’s. Don’t let online forums and chat groups scare you. Everyone shares their experiences, and sometimes it is scary and overwhelming and might seem as if your future is in peril. Remember, everyone has different traumas, lifestyle factors, support networks, resources, perspectives, and disease progression. Please advocate for yourself and know that AS varies widely from person to person.

Over time, you will become more compassionate and empathic. Let this part of you grow. Don’t let AS harden you. Don’t let it make you hate the world. Take your pain and transmute it into love and empathy for others. That light will help others, and in turn, it will help you.

Love your body. Feed it, nourish it, and care for it any way you can. It is not bad or broken. It’s just yours and needs different things.

In the end, know that this is a personal journey that won’t always be easy or even meaningful or poignant. But it is yours. Use it to build character, embrace individuality, and help others.

Oh, and if you ever need a friend, you can find me here and here.

Best, Lisa

***

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.