Coming out Chronic: coming out advice for talking about your chronic illness – by Callum Radley
My date looks concerned. He watches as I quickly massage the base of my head and attempt to stretch the ache into submission. Perfect. I had hoped I could stretch the pre-health-discussion-period out longer but as per usual, my body will not cooperate. I’ve burst his bubble and we’re not even two-hours in. I sigh and give him my spiel.
“I’m sorry, I thought I would be okay but I might have to cut this evening short, I have a chronic illness. It causes me constant inflammation and muscle fatigue. I was feeling great earlier and I’ve been having fun but…I’m just saying, if my pain levels continue to increase, I’ll need to go home”. He is caught off guard.
His gaze shows both pity and disbelief. He looks harder at me, surprised he couldn’t ‘spot’ that I have an autoimmune disease. Invisible illnesses do that – surprise people. He narrows his eyes a little bit, as if he can squint away my form and see the inflamed aching bones beneath.
THE PLATITUDES
Here they come, right on cue: “Everything seems fine.” “That’s so unfair you have to deal with that!” “Well maybe if you tried [x] you would get better.” “I feel so bad for you.”
Sigh.
We haven’t even gotten out of step one-of-five. Sometimes I get through them all: denial, anger, bargaining, depression and…that other one.
THE LAST STEP OF GRIEF
The last step, the one I rarely get to, is acceptance – acknowledgment of my illness in a useful way. Discussing it is never easy, and it really gets old. The topic is heavy. A real mood killer. When I tell someone about my chronic condition, I can’t help but feel like I am raining on their parade. Illness comes with a lot of baggage.
I prepare myself to dive back into a touchy subject I’ve become increasingly desensitized to over the years.
HOW BEING QUEER HAS HELPED ME
It helps that, for me, the process of revealing is familiar. As a queer individual I’ve had to ‘come out’ to many people in my life. In both scenarios (coming out queer or coming out chronic) I share something that is important to me, I reveal a vulnerability, and share a bit of who I am. It’s not a secret, but it is personal. Some take it well, and others don’t.
Unlike my sexuality, my diagnosis is sometimes forced out. My symptoms can be unpredictable and manifest at inconvenient times.
HAVING “CHRONIC ILLNESS” AS PART OF MY IDENTITY
Living with an autoimmune disease like ankylosing spondylitis means that flare-ups can happen at any time. They require specific care and limit my activities. This can result in cancelling plans, showing up late, mood changes, and other social faux pas.
To the uninitiated, this behavior comes off as disinterest or flakiness, which is why, personally, I tend to introduce the topic immediately.
Having to dish out my medical history on or prior to a date, can be nerve wracking. First impressions and all. I try to present my diagnosis in a way that doesn’t overshadow my identity because it’s important that people understand that I’m a multifaceted human with interesting quirks outside of my physiology.
MY COMING OUT ADVICE
Coming out queer and coming out chronic are surprisingly similar. Both are a very vulnerable conversation that can get away from you quickly.
Even though I was inspired to write this after a series of Tinder dates, I have the coming-out discussion in a multitude of contexts. I share this information with my employers, friends, and family members. The wording evolves, but points and principles are consistent.
1- Set the tone
Consider how you frame your illness and its impact on your life. Most people will mirror your attitude and take your lead in how you handle this sensitive topic. I have found that maintaining a firm but optimistic tone encourages respectful responses that aren’t soaked in pity.
2- Be candid
Don’t minimize what you’re going through. You don’t have to share everything but you should avoid downplaying your symptoms.
3- Be prepared to answer questions
Often the person I’m speaking to has never heard of my condition, so to avoid misunderstandings I make sure to pause and allow for questions.
4- Don’t be afraid to set boundaries
This is YOUR private information. if someone is asking invasive or insensitive questions feel free to shut them down. Let them know if their line of questioning is intrusive, or that you’re not looking for medical advice from anyone besides your physician.
5- Share what you feel comfortable with
You don’t have to share your entire medical history. Again, this is personal, and you can explain your symptoms without naming your condition. I often summarize it as “chronic back and joint pain” – descriptive, yet general.
6- YES, IT IS FOREVER!
I cannot stress this enough to people. Some people inquire about what my prognosis will look like, expecting a recovery time. Or later, someone may remark that I’ve been sick for a while now. People have a hard time with the “chronic” part of chronic illness. But it’s hard to process, especially for someone able-bodied who hasn’t confronted a permanent affliction. My condition has no cure. There is nothing I can do, work harder at, or change in my lifestyle that will stop my autoimmune disease.
LEARNING
This conversation isn’t easy, but I try to treat it like an opportunity! An opportunity to spread awareness, clear up myths, and provide information on my condition I wish more people knew. And if they aren’t receptive then I’ve learned something valuable – this is not an individual I need to interact with again. Simple as that!
Coming out chronic gets repetitive, but I hope my coming out advice helps you. To me it feels invasive and exposing. But I find the more I practice asserting my needs, the more I have them addressed. I am my best advocate and I need to make sure that I am heard and seen. So do you.
From the Editor:
If you found this article interesting, I recommend reading Carolanne Monteleone’s article, “The Marriage Penalty: Choosing Love or Money” which is about the hard choices Carolanne had to make as a gay woman on supplemental security income.
Callum Radley is a twenty-something living with ankylosing spondylitis. They have been diagnosed with bipolar
disorder, generalized anxiety disorder and depression. Callum currently supports themself as a freelance artist and jewelry maker. Their works are strongly influenced by their experiences with mental health. Callum hopes to help young people advocate for themselves in the discussions on healthcare policy and reformation. You can find their art on instagram, their online store and their personal blog