Learning Adult Lessons Through Having AS
Perhaps a silly title, finding out how to go from a teenager to an adult was quite a journey for Keegan, my husband with AS. We started dating at 17, went to college together, and moved in together while I was in grad school. Through all of this, Keegan's tremendous pain impacted his health dramatically. It meant having to grow up quickly and learn some hard life lessons. So really, this article is for my younger self. Auldyn--listen up. You can help Keegan earlier! You can help yourself earlier! Just follow these life lessons.
1. Listen to your gut: you know the pain isn't normal.
For the longest time, Keegan wrote his pain off as "normal" for a tall guy. But one night in Pittsburgh after a long shift as a barista, Keegan had to drag his leg from our car to our apartment. I knew something wasn't right. My brother was tall, and he didn't experience problems like this. So, looking back, go to the doctor! Yes, Keegan didn't have health insurance at the time, but now I know that most locations have payment plans and will reduce costs for the uninsured.
It's not a sustainable way of getting healthcare, but at the moment, we could have learned more and possibly found him a health insurance plan earlier to get care earlier. It's worth knowing why extreme pain is happening to make the best healthcare decisions.
2. Don't put that medical debt on a credit card unless you absolutely have to.
I'm still paying off a credit card today carrying a fair chunk of change that came from MRIs, X-rays, etc. when Keegan was going through diagnosis and initial treatment. I didn't understand that the vast majority of hospitals and doctor's offices will set up payment plans regardless of income. I had always assumed previously that payment plans were only for those who qualified below a certain income level.
Once I learned that payment plans are often available at 0% interest (i.e. I don't have to pay more on the bill), it changed my debt strategy dramatically. Now working with a financial planner, we're able to pay off the debt incrementally across different accounts without paying more than we need to.
3. Just because Keegan has a chronic illness, doesn't mean you have to give up hopes and dreams.
Yes, it's going to be a tough road. You're going to feel guilty. "Why didn't I get help sooner?" "Can I do anything for his pain?" Feel those feelings in their fullest, but don't give up on your hopes and dreams in life. The beginning of treatment is a diagnosis: don't despair yet. You won't know how Keegan's body reacts to different medications. Only worry about whether or not it's possible to have kids until you've exhausted all options.
This was one of the toughest lessons for me to learn. I tend to be a very Type A, anxious person who always wants to plan out the future. But at the end of the day, I had to remember my biggest priority: Keegan's health. If there was any hope, it'd be in putting his AS into remission or slowing it down and finding pain management techniques.
Look at us now--5 years later, 4 medications, 2 hip replacements, and a toddler. Things didn't end up nearly the way I could have ever planned. And that's fine. Some surprises came up, but also some things happened just as you thought they would. His hips were in bad shape like you feared. Keegan's SI joints are totally fused. Neither of those is a death sentence, and after all, most doctors are there to help. Just find the ones you truly believe will help you.
So Auldyn, I hope you see that life never goes the way you planned. And in the midst of all the stress and confusion and tears, you made it out the other side. The uncertainty of this disease will never go away and each day you're learning how to cope with that. It's the toughest lesson of all to learn in adulthood, but it's one that will help you enjoy the moments you have as a family.
Do you use the word disability to describe your AS?