person laying in bed with flames around them

My Top Do’s and Don’ts For Flare Days

This morning, I woke up with a familiar, burning ache in my bones. In those first few hazy moments of consciousness, before I could even think a thought, my attention was drawn to the crushing, stinging pressure in my ribs and spine. Next I noticed throbbing pressure in my head as though I was out drinking all night (and I don't even drink socially). With my face wincing, I reached for my heating pad, which is nestled underneath me in bed at all times—and I knew it was going to be a hard day. All before I even opened my eyes.

This is just one very small part of living with ankylosing spondylitis. Not knowing what the day will bring and having to adjust your plans with no warning. After six years of ups and downs living with this disease, including coming out of remission (which was devastating), I’ve learned a thing or two about how to treat myself mentally and physically during flares. Here are my top do’s and don’ts for coping when this disease sinks its fangs into you for the umpteenth time—and these reminders are just as much for me as they are for you.

Don’t hold yourself to healthy people standards

On flare days, I am lucky if I can manage a shower and something to eat. And the most effective way to make myself feel like absolute garbage about that is to compare myself to a healthy person and what they can achieve in a day. Up and at’em by 6 a.m., crushing a workout, tackling a huge to-do list, and sharing happily about it on social media. Simply put: You do not have the same body or abilities as these people. You are not less than; you are just different. Your strengths lie elsewhere. If they had a painful, progressive disease too, they wouldn’t be able to do as much as they do.

Do know it’s normal to envy healthy people

At the same time, when feelings of jealousy arise because you wish you could do more, let them come. It is normal to want to be free of this disease and its chains on you. It is normal to feel bitterness and even anger at times toward those who seem to take their physical ability for granted or who appear to skate through life without the kind of suffering you experience. It’s even normal to feel sorry for yourself. But feeling those powerless feelings and then noticing where you do have power and advantages is important. What do you know about life that perhaps they don’t? What skills have you gained that are unique? How are you mentally tougher now?

Don’t believe every thought you think

This flare is not your fault, your medicine probably isn’t failing on you, and you’re not destined to live a miserable life. In great physical or emotional discomfort, you are bound to have all kinds of extreme thoughts cross your mind. My rule with myself is: Don’t act on any thoughts you have when you feel awful. Just note them and then revisit them when you are feeling more like yourself. Flares still happen while on good medications, flares don’t always have a reason you can pin down, and flares don’t last forever.

Don’t force yourself to stick to a predetermined, pre-flare schedule

Rigidity when you have a chronic illness just doesn’t work. Being tied to your plans when your body is screaming for you to adjust them only ensures that the next day will be more of the same. If you instead choose to intentionally rest and build up your reserves, you are more likely to come out of this faster. As I rolled over and stared at the ceiling this morning, I took a mental inventory of the tasks I could possibly move or adjust, a strategy I use often. To a normal person, that might seem tragic, but for me, it is a crucial part of how I live in an empowered way with this disease. Acceptance and flexibility are my superpowers.

Do try to tackle one task, even if from bed

By the same token, being 100% mentally and physically inactive makes me feel worse, every time. Picking one to two small tasks to achieve helps ground me and makes me feel like I have a shred of control. Whether it’s organizing a small corner of my home, opening mail, paying a bill, or making an overdue phone call, anything at all is better than nothing. But if you truly can’t do a thing, know that rest is actually productive for people with ankylosing spondylitis—-and we need to play the long game and look at it as an investment in our overall health.

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