“It looks like something deeper is going on,” the doctor told me. I was in my early 20s, when I still felt invincible and my spine hadn’t yet turned to stone, so this was shocking news to me. The suggestion that my eye issues were possibly the beginning of something much worse scared me.

When I was in graduate school, I started experiencing extreme eye inflammation. My optometrist, who fitted me with glasses and contacts, misdiagnosed my issue as contact irritation. Sitting in halogen-lit classrooms and reading textbooks late into the night with swollen, photophobic eyes wasn’t exactly working for me, so I saw an ophthalmologist and then another doctor at a specialty eye hospital when I wanted more answers.

It was around then that I first tested positive for HLA-B27, a gene marker associated with ankylosing spondylitis (AS). Although you don’t have to test positive for HLA-B27 to have AS, and you can be negative for HLA-B27 and still have AS, it is nonetheless one of the ways in which doctors begin to make a diagnosis. It turned out that I had uveitis stemming from chronic inflammation, not contact irritation.

From that point on — learning that uveitis was likely indicative of a larger, systemic issue — my AS diagnosis journey began.

Eventually, my irritated, inflamed eyes stopped being my main symptom. Before long, I started experiencing gut issues (30% of people with AS have irritable bowel syndrome), fatigue, brain fog, and full body pain, though with a concentration in my spine and hips.

For about a decade, I could somehow manage my AS, as my flares were few and far between. I’d pop a few Advil, stretch, and sort of ignore the reality of the worsening pain. At this point, even though I did feel pain, it was much more mild than it is now.

But by my early 30s, I realized I needed to seek treatment — not only to reduce the number of debilitating flare-ups I was having, which were becoming more frequent, but also to protect my body from future inflammatory damage.

It would be years before I started my first biologic therapy. Not only did I experience lapses in health insurance and periods of denial over how serious AS was, but I also felt a heavy sense of medication anxiety, as the immunosuppressant medications used to treat AS were linked to cancer risk and increased infections.

The ups and downs of AS and its treatment taught me a great deal about what it means to advocate and care for myself. Below are the seven things I’ve learned along the way that I hope will help you, too.

As a health writer and patient advocate, I frequently get messages from people who think they have AS and those with a recent diagnosis who are feeling overwhelmed. First, know that post-diagnosis grief is real and valid and that you’re not alone. It can feel like you’re swimming against a tidal wave of questions.

My best ways of mitigating the overwhelm were to arm myself with knowledge and speak up for myself with the doctor. It’s important to be ready for your appointment and to have questions on hand. Some of the questions you might ask include:

  • What are my potential treatment options and the specific risks associated with each? If a risk stands out to you — say, the potential for infections or cancer — ask for numbers. For example, how many people who take these drugs get cancer?
  • What are the risks associated with not receiving treatment? And are there risks associated with just taking pain relievers, like Advil or Tylenol, versus other drugs, like biologics?
  • How will I receive, take, and pay for my treatment?
  • Are there educational or support groups associated with the doctor or hospital?
  • What happens if my health insurance refuses coverage? Can their decision be appealed?

It might also be worth asking whether the drug company offers a nurse or ambassador to help you get used to the drug, as this is a common program for some biologics.

When it comes to seeking clarity, people often feel embarrassed to admit that they don’t understand something their doctor has told them. Remember, they’re the ones with the medical education, and it’s their job to help you! It is so important — and very normal! — to ask the doctor to repeat themselves if you don’t understand something.

If you and your doctor decide it’s best for you to start a medication, this may make you feel a bit anxious — especially if it’s an injectable you have to give yourself or a transfusion therapy. Needle anxiety is pretty common, but you’ve got this.

When I started a biologic injection, I had my partner learn how to give it to me. Later on, when I got more used to the idea, I could do it with my eyes closed — literally.

I credit a few things for this newfound ability. During the injection time, I reminded myself that it was good for me and normalized it by playing something familiar and cozy in the background, like music or a movie.

I also talked with other patients and watched a lot of #InjectWithMe videos on Instagram, TikTok, and YouTube. These videos helped me in two ways. First, they showed me that other people could self-inject confidently and be totally okay afterward. Second, they showed me how other people made the injection process easier and less painful.

My pro tip for a refrigerated biologic injection is to let it warm up to room temperature for about 30 minutes before injecting it. Also, rotate injection sites so that you’re not puncturing the same spot over and over! Take a big, deep breath right before you press click, and set a timer on your phone or count to 10–20 seconds so that you inject every last drop.

When all else fails, have someone with you. It’s okay to ask for help.

Perhaps the most important realization I’ve had since finding myself on this AS journey is that no person with AS is the same as another. When I first started joining AS support groups, I’d read frightening posts about certain treatments. This would lead me to experience — at best — medication anxiety. At worst, I even skipped an appointment with my rheumatologist.

There are many kinds of drugs for AS — from tumor necrosis factor-alpha inhibitors, like Humira, to interleukin inhibitors, like Cosentyx — and they each work differently within the body. If someone else experiences drug side effects, that doesn’t necessarily mean you will. Likewise, if someone goes into remission, that doesn’t necessarily mean you will.

Every person is different. We all have different immune systems. We live in different environments. We have different genetics. We eat different foods. We exercise differently. And we manage stress differently. Some of us have multiple immune-mediated diseases. As a result, it’s impossible to predict your treatment response.

The truth is, it’s all one big journey. You may start a medication and find that it works well. Or you might try a few — doing so is common — before you land on the one that helps you feel better.

Take care of yourself now.

Medication is a hot topic in the AS and autoimmune communities. Many people with AS go the pharmaceutical route, but others choose not to, preferring other remedies. Some people try a mix. This choice is deeply personal, and it should be made with a professional, like a rheumatologist who specifically focuses on AS.

Although I am a fan of medication because evidence shows that it slows the progression of this disease by reducing inflammation, AS is a unique disease in that it also responds well to holistic care.

In addition to medication, I invest in smart nutrition, regular stress management, and sleep hygiene. I also aim for daily and constant movement because AS responds better to movement than to rest. I have completely changed my lifestyle — a privilege — to accommodate my AS, which means going from a corporate job to freelancing at home and building time into my day for frequent movement.

Medication can help in the long term, but AS flares may still occur often, even with treatment. Knowing your triggers can make a huge difference even after you’ve started treatment, which is not a green light to go wild.

Start taking note of what makes your pain worse. Is it a long night out with one too many glasses of wine? Is it poor sleep? Not getting up and moving around enough? Get in tune with your body and make holistic changes that help you tend to it.

When you’re in pain, it can be easy to fall into cure-alls. But no, apple cider vinegar shots alone won’t cure your AS.

Suffering can make us a little desperate, as I’ve learned the hard way. For this reason, I deeply recommend educating yourself. Try the following:

  • Read studies and reviews authored by peer-reviewed medical journals on PubMed. You can enter search terms like “ankylosing spondylitis alternative treatment” on the site or Google “ankylosing spondylitis treatment” + PubMed.
  • Read books by experts with medical degrees, which may be helpful regarding anti-inflammatory foods and stress management.
  • Join information and support communities like AnkylosingSpondylitis.net.
  • Keep up with news published by The Spondylitis Association of America.

Essentially, question your sources, ask questions, and keep a detailed health journal, as you are the best source of information about your body.

I’m a big fan of the Spondylitis Association of America, which connects people with AS to local support groups, both in person and on Zoom, which is awesome during a pandemic.

I’ve also met many friends and supporters through Instagram, where hashtags like #ASWarrior, #AnkylosingSpondylitis, or #AxSpA (axial spondyloarthritis) will lead you to all sorts of amazing advocates who share their experiences. Many of the people in these groups or on other social media sites have been through diagnosis and treatment and are incredibly open to helping others and answering questions. You are not alone.

Being diagnosed with ankylosing spondylitis can feel overwhelming at first. I hope reading about my journey will help you understand that you’re not alone. Managing this chronic condition and getting the right treatment involves asking questions, conquering fears, and leaning on the support of others.