Arthritis Support for the LGBTQIA+ Community
As an arthritis patient and health care provider, Erika Warner Poland shares their story and calls for better support and rights for LGBTQIA+ patients with arthritis.
I have been a nurse for almost 20 years but have only been in rheumatology for the last two years. 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 two years 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 in 2021, 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 2023 was two years since my diagnosis, and it took a while 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 year. 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. February 2022, 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. All of this on top of my day-to-day life has been a struggle at times. But I am now finally on a medication that is regulating my inflammation and pain and I am almost back to my pre-diagnosis functioning level.
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.
While working as an LPN, I also started a registered nurse (RN) program in fall 2022 and I’m on target to graduate in 2024. This brings me one step closer to being a rheumatology nurse practitioner myself.
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 needed 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 2022.
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, me 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.
I am so excited to be celebrating another pride with you all! We just had our early pride celebration in the LGBTQIA+ Connect Group and I was reminded of how the intersection of being queer and having mobility and/or issues is a problem when we want to celebrate our pride with folx who do not have mobility and pain issues. It is a struggle to be out and proud when you are tired and sore and hard to enjoy yourself when you are constantly worrying about if you can find a place to sit and rest and what to do if there is not. Pride should be accessible to all, and I hope that myself and even our group can work together and make that happen.
This year I have been focusing on self-advocacy as well as empowering others to advocate for themselves. This is one of the most important things for an LGBTQIA+ person to have in their health care and even daily life toolbox. By advocating for ourselves and others, we can affect the change that we want to see in health care and even at our local prides.
Our LGBTQIA+ Connect Group has a full summer and early fall of meetings coming up. On July 23 you can join us for a discussion on living with more than one diagnosis (arthritis or otherwise) and on September 10 our discussion will be about community.
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Ep. 62 Real Talk: Tips for Better Doctor-Patient Communication
LGBTQIA+ Connect Group
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