Patient Blogs | Ankylosing Spondylitis
It's Not You, It's Me
photo of tired man in bedroom

Having a chronic illness is something most people don’t have to experience, thankfully. I know when I was diagnosed with ankylosing spondylitis, I had no idea what to expect. So it’s hard for me to get upset when someone that is healthy doesn’t understand why I can’t do something. There are plenty of times that I have suffered in silence because I didn’t want to hurt someone's feelings. Here are a few of the things that I wish people knew about my journey with living with ankylosing spondylitis.

The one thing I hate to do is cancel plans, but there are times that I have to. I can be having a great day, just hanging around the house not really doing anything, and then … BAM! The pain hits. It’s literally that quick and for no reason. I have been watching TV in my recliner, and my back will start spazzing for no reason. On the other hand, I have been able to do yardwork all weekend and had no ill effects. So just because you saw me out and active one day doesn’t mean I canceled my plans with you because I don’t want to hang out. Trust me: It’s not you, it’s me.

Living with a chronic illness, you have things to consider before making plans. It’s hard to just get up and go. Sometimes, we have medication that we have to take. Those medications may have side effects, so maybe we can’t stay out all day. Or maybe, like me, mornings and evenings are usually the worst part of the day, so I try to plan around that. Traveling can be tricky sometimes too. I try to get to the destination a day before so I can rest from traveling. Making plans when you have a chronic illness can be challenging sometimes. Not to mention doctor appointments. I have gone through periods where it seems I have a different doctor appointment every week.

Everyone is different. This is the most important thing to me. I know a lot of people with ankylosing spondylitis, and we all have different experiences. So just because someone knows someone else with ankylosing spondylitis and they are able to do something, that doesn’t mean I will be able to do the same thing. Not everyone deals with pain in the same way. Some people want to be left alone and others want to be distracted with friends or family.

I wish people could understand the fatigue that comes with ankylosing spondylitis. It’s not just the “I’m getting tired” kind of fatigue. It’s the “I’m not sure I have the energy to take one more step” kind of fatigue. Think of it like this: A relatively healthy person gets tired when they have the flu. Well, when my ankylosing spondylitis flares up, it’s like this but 10x worse. I can say I’m tired, but I can’t express how tired I am. The only way I can get close is equating it to walking in deep sand. Every step takes extra effort, and just walking across the room is a chore. 

People with ankylosing spondylitis can do most things everyone else can do. We may have some physical limitations, but most of us just want to be involved. Don’t give up on us just because we had to cancel some plans or had to say no to something. We may require a little more patience, but trust me: It’s not you, it’s me. 

 

 

 

Photo Credit: RapidEye / E+ via Getty Images

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Daniel Garcia

Daniel Garcia

Diagnosed since 2003

Daniel Garcia was diagnosed with ankylosing spondylitis in 2003. He enjoys gardening and traveling in his pop-up camper with his wife, Melissa, and dogs Chloe and Tilly on his good days. Garcia writes about travel on RoamingMyplanet.com and gardening, technology, and DIY on ConsumerQueen.com. You can connect with Daniel via his Instagram account.

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