A Queer Guide to Chronic Illness: My Rollercoaster Journey with Chronic Pain, Fibroids, Hysterectomy, and More

How did you go about seeking a diagnosis?‍

It was hard for me at first to seek a diagnosis because, as a self-employed hairdresser, good health insurance wasn't always easily accessible or affordable. So, for a long time (from ages 18 to 30), I went to urgent cares and relied on supplemental insurances. However, this approach had its challenges as I saw different doctors all the time, and unless I could afford to pay out of pocket, it often led to dead ends and temporary solutions for the pain. It was on and off for a while until a year ago when I obtained excellent health coverage through my wife's work. That's when the real journey began, as I finally found a good primary doctor who, for the first time, made me feel seen.

How long did it take for you to receive a diagnosis?‍

If you count from the time I first started seeing doctors for mysterious pains and rashes related to my autoimmune disease, it took 14 years. However, if you consider the period since I was able to actively pursue the root cause due to great health coverage, it took one year.

How did you feel when you received your diagnosis?‍

I cried. I literally was just overwhelmed that someone finally told me something was up and that they had found something, because after copious amounts of tests and not getting anywhere, I was expecting to hear the same. I basically accepted the fact that it must all be in my head and to ignore it. This diagnosis validated me.

How did you communicate your diagnosis with your loved ones?

I called my wife first, and then I snapchatted my siblings, whom I'm pretty close to. They all knew that I was feeling pretty defeated, so it was a sigh of relief to finally tell them something.

What treatments have you undergone, and how have they impacted you?

I couldn't even count how many blood tests, X-rays, MRIs, and CAT scans I've received. It has all become common practice - I know the phlebotomists' names, and we joke around now. It's kind of just what I have to make time for and has become my new reality. I have to admit that it wasn't until a couple of months ago that I really started to embrace my "new normal." Just a week ago, I started on biologics and have been doing well with it so far, even though I couldn't administer it myself. I'm not sure if I'll ever be able to - we'll see! I know I have a lot of tattoos, but it's funny to say I don't like looking at needles.

What is the most difficult part of your treatment, and how do you manage it?

Right now, I feel so green. I'm so new to biologics. I know my disease is progressive, so the biggest challenge right now, as I'm considered more of an "early stage," is actually remembering to love my body, respect it, and thank it for everything that it CAN do for me. Sometimes I'm in so much pain that I don't want to move, but the challenge is making myself move. Even if it's just from the bed to the bathroom or from the bathroom to the kitchen. Baby steps.

What has been the most challenging aspect of living with your condition?

The ups and downs. Again, I'm a hairdresser by trade. It's all I've ever done for the past 13 years. It's hard on your body. I've always known that I can't do it forever, and I have made a pretty great name for myself in the industry, moving towards education and life coaching instead of being behind the chair all the time. Sometimes I just feel like I have to power through, not just doing my job and doing it well, but also being a chameleon in conversation, all while dealing with the pain and intense brain fog, as if nothing is wrong. I'm hoping the new biologics treatment will help, and honestly, this past week, I haven't felt this good in a long time. I've always taken this time to re-evaluate what I want to do that puts myself and my body first, so I'm currently studying for Certified Personal Training and Nutrition, so I can use my voice to empower others who have experienced what I have, so they don't feel as alone as I did. I'm hopeful for the future.

“I started to take the small wins as big ones and love my body for what it can do for me, and that's been a game-changer.”

How has your daily life and routine been affected by your condition?

Well, for starters, I'm completely realigning what I'm doing with my life, so there's that. It's been a journey of self-discovery and finding a new routine in that discovery, but right now, it's a good feeling.

How has your condition affected your mental health and emotional well-being?

If you had asked me a month ago, when I had fibroids that were growing at an exponential rate and I decided a hysterectomy would be best, I would have told you it was not good. I think that was my lowest point so far in this journey. It made my AS, fibromyalgia, inflammation, chronic pain, and rosacea even worse - basically, my whole body was mad, and nothing I did helped. If one more person told me to take turmeric or watch out for nightshades, I was going to puke (metaphorically speaking). I felt so helpless. Ever since my surgery, it's been like night and day. I remember the moment it hit me, and I knew I needed to realign and put myself first - it was when I finally saw my ankles after not seeing them for months. It was euphoria, like a new lease on life. It's been a rollercoaster, and I know it will continue to be, but that's when I started to take the small wins as big ones and love my body for what it can do for me, and that's been a game-changer.

What strategies have you found helpful for managing your emotions and thoughts?

Being an entrepreneur with multiple businesses now, making a to-do list, in an actual book, for the week and then taking time every morning to write down my top 3 things I want to accomplish that day has helped so much. Again, it's the little things. Taking time for yourself is SO important, even if it's writing a short list. The list can be: 1. Get out of bed. 2. Stretch your toes. 3. Walk outside. Or it can be more task-oriented, like: 1. Make a social media post. 2. Do yoga for 20 minutes. 3. Call Dr. Wherever you're at in your journey, it helps with mental health to feel like you have a purpose, and sometimes, depending on where you're at, that purpose is that list. I also have made it non-negotiable to go walking every morning and be sure to get active and walk around (even if it's in circles around my house or studio) every few hours.

How has your diagnosis impacted your relationships with your friends and family?

I think sometimes I feel more isolated because people don't really know how to react. You know they're empathetic but not sure how to support you, or maybe they're afraid to ask - this is especially true in social situations. But for the most part, I have a really supportive circle, including my wife, who has been outstanding through all this. I seriously don't know what I would do without her - she's been such a rock. I know there are people who have to go through stuff like this alone without a partner, and every day I'm grateful I have her.

What support systems have been helpful during your health journey?

My wife, of course. And my primary doctor is phenomenal - it's so hard to find doctors and nurses who really care about the human being they're helping and don't feel too overwhelmed. This has been so important to me. There are also these apps called PainScale and The Mighty - PainScale is awesome for tracking pain and thoughts and sharing with whoever you need, and The Mighty has been a great source of inspiration and community.

What advice would you give to someone who has recently been diagnosed with your condition?

Not every day is going to be great, and some days you're not going to want to get up at all, but remember that what's most important is that you keep moving, no matter how much it hurts. Just keep moving, even if it's getting vertical and doing some stretching, moving the limbs at whatever capacity you can. Keep moving. It gets better.

What advice would you give to your past self if you had the opportunity to go back in time?

Listen to your body. Everything that's happening is the best way for your body to communicate what it needs from you - intuition is everything.

How can others be more supportive and understanding of people with your condition?

Don't treat us like we're inept. Additionally, don't tell us that we don't "look" sick. Invisible illness is a real thing, and about 10% of the population either deal with chronic pain or have an invisible illness. Don't assume and practice human decency.

How have your experiences in both the LGBTQ+ community and managing your chronic illnesses shaped you personally? Have you discovered any unique strengths within yourself as a result?

Basically, advocating for myself because I am a minority came easy for me because I've already faced adversity as a queer person just in general. I came out at a very young age, so I had a lot of experience by the time this happened medically to where I knew how to speak up for myself. From misgendering to not having proper gender markers on paperwork, or not letting your partner in with you "because you're not family" before the marriage law, to just common assumptions and misconceptions - it's something that's very real both in the medical field and day-to-day for a queer person - so I would say being able to speak up for myself and others is a definite strength. 

Are there any online resources or support systems specifically tailored to individuals who identify as LGBTQ+ and are navigating life with a chronic illness?

Locally, there's L-Fund and DAP Health (Desert AIDS Project), both of which provide individuals with a multitude of things, medically speaking. Otherwise, I've yet to find anything else other than a great online community through TikTok and Instagram.

Looking for support and resources as a fellow Ankylosing Spondylitis warrior? Click here.

‍A guide to Fibromyalgia and support resources, here.

Find support and learn more about Rosacea, here. 

Find support groups and more information on Fibroids, here.

Need guidance and resources on Hysterectomy? Click here.

Seeking Chronic Pain support groups? Click here.

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Disclaimer: Please be aware that the content of this patient story, is solely the viewpoint of the individual(s) involved and should not be considered as medical advice.