Arthritis Support for the LGBTQIA Community
As an arthritis patient and health care provider, Erika Warner Poland shares her story and calls for better support and rights for LGBTQIA patients with arthritis.
My name is Erika Warner Poland (they/them). I am currently working as a nurse in a nurse practitioner rheumatology clinic in Lansing, Michigan.
I have been a nurse for almost 19 years but have only been in rheumatology for the last year. I live in Lansing with my husband and our many furry kids. I am also a queer, genderfluid person living with rheumatoid arthritis, psoriatic arthritis and osteoarthritis.
I was diagnosed with my many types of arthritis just over a year ago. I have lived with chronic back pain and plantar fasciitis since I was in my late teens, but my pain was always brushed off as being caused by other things. When I took my current job, I began noticing many of the patients I was educating on their diseases and medications shared a lot of the symptoms I have.
So, I made myself an appointment with one of our providers after talking with her about my symptoms. I had always suspected that I had rheumatoid arthritis since my maternal grandma also had it. Lo and behold, my suspicions were correct. My X-rays also confirmed the psoriatic arthritis and osteoarthritis.
April 2022 was a year since my diagnosis, and we’re still trying to find that golden combination to get me to low disease activity. As I am sure most of you are familiar with, there are insurance hoops to jump through every time my provider and I make a new treatment plan.
My insurance required a four-month trial of two separate disease-modifying antirheumatic drugs (DMARDs). I was unable to tolerate one of them. But I was able to start my first in July 2021, which worked well until September. That month, I herniated a disc in my lower back, causing nerve compression. This led to me having surgery and having to stop my medications during recovery.
Once I was able to restart the biologic, it just never gave me the relief I was feeling before. This past February, after being steroid-dependent for three months, I squeezed in an appointment with my boss (and provider), and I got switched over to a new biologic, which is where it stands today.
I am not sure it is the right medication for me. I’m still having lots of back and foot pain that wakes me up fairly regularly, but I know between myself and my provider, we’ll solve this mystery and get me feeling better!
All of this on top of my day-to-day life has been a struggle at times. I’m currently a licensed practical nurse (LPN) and will be starting an registered nursed (RN) program in the fall. The thought of going through a clinical rotation with how I currently feel scares me a lot. But I’m so grateful to at least get treatment and answers to why I have felt the way I have for the last 20 years.
In addition to the physical side of all this, I also have bipolar II, which was exacerbated at times over the years, I’m sure from my pain and the unknown causes. Thankfully, I have an amazing mental health provider who is an invaluable part of my care team and always makes sure my mental health is in tip-top shape.
Along my journey, my boss received an email that the Arthritis Foundation was looking to start an online support group for LGBTQIA folks living with arthritis, and that they were looking for a speaker for their first meeting. She instantly thought of me and asked if I was interested. Of course, I was!
I met with Ro, who was working to facilitate and organize the group via Zoom. As we were talking, she mentioned that she was in need of a co-facilitator, and I knew that I wanted to be more involved in the group outside of a one-time speaking engagement. So, I volunteered to co-facilitate with her with a plan to have our first meeting in September of this year.
Health care for LGBTQIA folks has come a long way. But there is still a long way to go in many areas. It is something I have always been involved in and advocated for as a member of the community and as a health care worker.
As a genderfluid person, gender-affirming care is of the utmost importance to me, and one of my biggest spots of advocacy in health care. So many forms at doctor offices are geared toward the two-gender binary, and having to choose your assigned sex at birth can be a huge trigger for many people, myself included.
One of the topics I’m most passionate about, and hope to have a meeting around in the future, is sex/intimacy and disability/illness. It’s such a taboo topic that doesn’t get properly discussed with providers for heterosexual patients, let alone a provider’s LGBTQIA patients. Throw in someone who is asexual or aromantic, and I don’t think most if any providers are equipped to deal with such topics. These are all things I am passionate about changing and educating health professionals on.
One of the most important things we can do as LGBTQIA patients with arthritis is to advocate for ourselves. Many times, providers default to the hetero-normative because that is what many of them are taught in their schooling. If a provider misgenders you, politely correct them and ask if it can be notated in your chart. You can do the same if you have a preferred name, but you have not legally changed it.
I know many times we have that heavy mental fatigue, making those sorts of interactions difficult. But they are important, not just for you, but also for any other LGBTQIA patient who follows after you at that provider’s office. We all need to take care of each other. And this is a small way to do that.