How to Advocate for Someone with AS
At 23, I became a caregiver when my husband Keegan was bedridden from nonstop pain and immobility. Immediately finding oneself in the caregiver role, it's hard to know the skills we need to help advocate for the person we love. Which questions should I ask of the doctor? When is a second opinion needed? Will our lives ever be the same again? But as the past 7 years have taught me, what's best is to figure out how to become a great advocate for and with Keegan. Sometimes he couldn't be an advocate for himself. So, I learned and Googled how to support Keegan.
Tips I've collected:
1. Observe and take notes
The best thing I've come to his appointments with are notes about what I see at home. What seems to pain him the most? When is he less mobile? What's a typical day like and what's his worst day like? These are all pieces that can help inform the physician of Keegan's state so that she can recommend new treatments or follow-ups.
2. Be emotionally vulnerable on behalf of the patient
It was tough for me and Keegan to decide to start taking Humira. We had tried a number of homeopathic treatments as well as a number of NSAIDs, as we were both terrified of some of the side effects. After moving to Philadelphia, we found a doctor who I felt more comfortable opening up to about these concerns. I confessed, "Look, I know there are promising improvements on a biologic. We're so scared about the side effects like cancer and TB." I knew Keegan was nervous to bring this up, so I wanted to be vulnerable in that moment so we could be confident in starting Humira.
3. If a doctor pushes too hard, be the one to push back
I sometimes tell Keegan, "If you really feel like something is off that the doctors says or does, and you don't feel comfortable, just let me know." While at times nerve-wracking, I'm happy to be the one who pushes back. One time, a doctor questioned whether Keegan was actually having mobility issues during a physical exam. The doctor accused Keegan of consciously tightening his muscles. I could see Keegan's shock from across the room. I stepped in. "Keegan's been like this for years. He hasn't had insurance. This is the first time we've been able to get help."
4. Get a second opinion and push for imaging or testing
This same doctor, through pushing and asking for an X-ray, gave in eventually. This would be the X-ray that showed 2 fused sacroiliac joints. He also did bloodwork showing elevated inflammatory markers. We finally had a lead and a referral to a rheumatologist.
5. Take what you read with a grain of salt
Ironic, I know. I'm apart of several online support groups. While it can be helpful to read others' experiences, I have to remind myself that not every treatment is for Keegan. My goal of any online support group is emotional support. However, I had to set that boundary for myself.
6. Figure out the best person to do online research
Sometimes I'm too emotionally involved to read through the side effects of treatments. Or confused by the jargon in medical journals. I ask for help. Online research has to be done methodically and carefully. Because the cause of AS is unknown, it's hard to parse apart the anecdotal evidence from good scientific evidence. Ask a friend or family member to help with research, especially for more medical sources that may be tough to easily read.
7. Advocate for their emotional wellbeing
Many of the surveys at the doctor's office ask about the physical wellbeing of the patient, but studies show that those with chronic pain are more susceptible to depression. If you live with the person you're a caregiver of, keep an eye out for changes in mood, behavior, and attitude. Stress and their emotional wellbeing will have an effect on that person's body. Pain and AS highly affect one's sleep. Keep notes about these aspects for doctor's visits as well.
It's a full time job
Being an advocate is a full time job, and whether or not you're new to it, it's overwhelming. The good news is that you're not alone. Other advocates and caregivers are with you. I hope that each of these tips may help others out there, and I'm always happy to hear what others do to help advocate for someone with AS!
Do you use the word disability to describe your AS?