Living with a Behcet's disease diagnosis

These symptoms, however, never struck enough damage to warrant more than a few days off and a roll of eyes from friends when I returned.

I struggled to adequately express my sense of ill-being for much the same reason I struggled to express my emotions at that age. I felt an inadequacy of language when it came to these intangible, invisible, internal feelings.

How do you accurately relate your experience to another human being when you can’t point to it and name it “cut” or “bruise”? For our emotional selves, we often turn to artists — musicians, poets, painters — to articulate these complex human conditions.

What do you do when you need help expressing hidden physical pain? Unable to describe what I felt, I silently carried this uneasy sense of malaise — until it was so familiar that it became invisible, even to me.

I first showed symptoms that I couldn’t discount at 17, when I developed my first genital ulcers. The doctor at the sexual health clinic clearly thought I was lying about not having had unprotected sex.

The second time the sexually transmitted infection tests came back negative, he was so angered at being bested by the source of the sores that he swabbed a painful ulcer so hard that the nurse cried at his disregard for my obvious agony. The moment he left the room, she swept me into a hug and said she’d get another doctor to examine me.

The first time I ever heard the words ‘Behcet’s disease’

This doctor took a gentler approach, asking instead about other symptoms — did I often get mouth ulcers? Yes, endlessly. Headaches? Fatigue? Joint pain? Then he gave his suspected diagnosis: “Behcet’s disease.” It was the first time I’d ever heard the words.

A rare autoimmune disease, Behcet’s affects around 600 people in the entire United Kingdom. However, this doctor had trained at a hospital in İstanbul, and Behcet’s is sometimes referred to as “Silk Road disease” because of its much higher prevalence in the region.

Through the lens of his experience, the invisible cause of my suffering was clear. He told me to get a referral to a rheumatologist.

Enter the rheumatologist whose “care” I first landed in.Despitethe cyclical nature of many autoimmune diseases, he ignored my reported symptoms, even though I had documented them in detailed diaries.

The lack of anything to present for him to examine seemed to make my suffering completely immaterial to him.

I’d wish for the visible signs of Behcet’s before a visit — bad mouth ulcers, external genital ulcers, or the large, painful welts that would pop up sporadically under my skin — because I hoped they would validate the hidden symptoms I reported: joint pain, allodynia (the skin on my upper body was painful under the slightest touch), fevers, and fatigue.

Humans have a fundamental desire to feel seen. Unable to accept what he could not see, it wasn’t just my illness that was invisible, I was made to feel invisible, too.

In the next 6 months, my health deteriorated significantly. I didn’t seek medical help because it seemed futile.

After weeks of being confined to bed with such severe ulceration I couldn’t walk and fevers so high I was incoherent, my flatmates, who’d been the kindest caregivers, knew things were too serious to deal with alone and called an ambulance.

A huge turning point

Those 24 hours changed everything. The rheumatologist on call exhibited genuine compassion, as well as a determination to find a treatment plan that worked.

She promised that I would remain her patient moving forward and that I could contact her at any time between our scheduled appointments if I felt I needed to be seen more urgently.

She made my experience feel validated. It was a huge turning point for managing my condition. Rather than the physical dissociation that had enabled me to endure the pain, I was encouraged to reconnect with my body. With few visible warning signs, I had to learn to listen more carefully for the early whispers — before they turned into screams.

I was in a better place to start managing my physical health, but still had a long way to go to emotionally process what this diagnosis really meant for my life. I had been through a huge physical and emotional trauma but had no scars to show for it.

Common greetings, like “You look great,” created a sense of dysphoria, as my external appearance didn’t match the internal feeling of the battle raging in my body. It was a feeling I was familiar with. I’d been openly bisexual since my teens, but having then had a boyfriend for a number of years, I constantly felt the erasure of my queer identity in the eyes of others.

Being perceived as straight and healthy brings real societal privileges, but misperception of your identity can also disconnect you from your sense of self. The choice was to accept that dissonance or learn to “come out” as having a chronic condition.

Not long after leaving the hospital, I had a chance encounter that helped me take the first steps on that journey. I was traveling by train and had forgotten my railcard. At the time, I was on high doses of steroids that had a major impact on my ability to sleep, and the exhaustion left a thick mental fog.

The ticket collector charged me the full cost of a new ticket, plus a fine. It was the straw that broke me. My emotions completely spilled over.

On the train, three women, ranging in age from thirties to sixties, sat at my table. They asked if I was OK, and through my uncontrollable sobs, I shared that I was struggling with a chronic illness. It turned out that all three of them had invisible illnesses: One suffered with fibromyalgia, one had multiple sclerosis, the third had diabetes. For the rest of the journey, we shared our stories, and they made me feel less alone.

The truth is, although rare diseases are individually unusual, they are collectively common. One in 17 people are affected by a rare disease at some point in their lifetimes.

Most illnesses are invisible, too. And even for those in good health, these are not uncommon struggles. Everyone recognizes the feeling of being alone in company when you are dealing with something significant: a breakup, grief, a stressful situation at work.

Talking honestly about my symptoms

I knew keeping silent was unsustainable, physically and emotionally. One of the biggest challenges of living with an unseen illness is that people don’t automatically make accommodations for you: socially, in the workplace, and also in public space.

One issue was that when I did raise it, nobody knew what Behcet’s was. Sometimes I’d just say I had arthritis to try and capture the joint pain in a language that people were familiar with. Or, “It’s a bit like Crohn’s,” which more people had heard of and which politely alluded to an ulcerative element.

I learned that even with mild joint pain, using a stick helped me through the day because it externalized an internal struggle — people would give up seats on the tube, friends would slow down when we walked together.

Yet not feeling able to truthfully share what I was going through still made me feel distanced from people I’d previously felt close to.

Oral and genital ulceration is a key feature of Behcet’s, but stigma and shame about the intimacies of our bodies meant that I’d shroud symptoms.

I learned to love my body for all it had been through and what it had survived.

As my confidence grew, and I saw the positive effects of speaking up, I wanted to free myself from that shame by talking honestly about my symptoms. Now, if people ask about Behcet’s disease, I am usually frank about it. Their discomfort when I list genital ulceration is their problem — it pales compared to the discomfort of actually enduring them!

Now that my health is better managed, the main challenge is keeping it visible to myself. I had to learn not to ignore mild symptoms because your base level pain threshold adapts, and it can quickly escalate. To combat this, I keep symptom diaries so I can look at a whole picture.

When you’re feeling well, it’s easy to forget to take your preventive medication. I have a huge folder of all my medical letters as a physical reminder of the invisible trauma. It stops the consequences of not taking care of myself from fading from memory.

Political invisibility during the pandemic

I am proud of who I am and grateful for what I’ve been through because of how it has shaped me. But as far as I’ve come, the pandemic made a lot of these painful feelings rear their heads again. Shielding literally hid us behind closed doors.

We’ve experienced political invisibility as the world reopens, despite vaccine efficacy being low among immunosuppressed people while the risks remain higher.

For the first time in years, I felt a returning sense of disconnection as friends resumed life as usual — celebrating their renewed freedom in restaurants, pubs, and clubs, while I kept receiving letters from the government advising me to remain isolated.

I am lucky to have found the medical support I have, in a nation where my access to healthcare doesn’t carry a price tag. But the shared experience of so many of my friends, particularly among women, is that hidden pain continues to be disregarded. Now, though, I am much better equipped.

My illness has taught me to take up space, to express my needs more vocally, and to make myself visible. I believe sharing our stories is the best tonic.

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