DHM Spotlight: “Hidden conditions aren’t really hidden, they just present differently”

This interview is part of an ongoing campaign for Disability History Month 2021, offering students the platform to share their experiences.

You may read references to ‘disability’, ‘chronic health’ and ‘long-term conditions’ throughout – all contributors were encouraged to use terminology they find to be most applicable to them.

Ella is a postgraduate student at University of Leicester, LSM President and SU Accessibility Officer. She has been working on this year’s Disability History Month campaign.

Please detail a little bit about your disability/health condition(s).

I was diagnosed with ulcerative colitis when I was sixteen years old. Similar to Crohn’s disease, ulcerative colitis falls under the Inflammatory Bowel Disease (IBD) umbrella and is categorised as a chronic, auto-immune condition of the lower digestive system.

Put simply, UC causes an overactive immune response in the colon and rectum which creates inflammation and little open sores (or ulcers).

Typical symptoms experienced include: abdominal cramping and pain, chronic fatigue, bloating, passing blood and mucus, diarrhoea and constipation, pain-induced nausea, urgency, weight fluctuation, joint pain, anaemia, low mood – all of that fun stuff.

A period where I am presenting symptoms is known as a flare-up, which can last anywhere from a few days to several weeks. While controlled with regular medication, the condition can go into periods of remission where my day-to-day tasks are relatively unaffected. But flares are often unpredictable, causing disruption to nearly every aspect of life.

I also experience poor mental health and have been periodically treated for a mood disorder, which becomes interrelated with the condition of my UC at any given time. If I’m going through a bad patch mentally, I’ll more than likely be experiencing UC symptoms to some extent by the end of that week.

How do you feel that your condition(s) have impacted your education?

My health conditions have had an undeniable impact on my education. Attendance is a big one: if you wake up on a bad day, realistically, you’re just not leaving that day and there’s very little to be done about it. Remote and hybrid options throughout the pandemic have been incredibly helpful in providing more of an even playing field.

Nonetheless, between my poor health and remote learning, much of my university studies have been completed independently. I can’t hate the way things have turned out – if anything, it makes me all the more proud of what I’ve been able to achieve academically.

But living with long-term health conditions can be very isolating and I can’t help feeling that I’ve missed an integral part of the university experience™ through the limitations that my health has put on me. I hope that, in my role as Accessibility Officer, I can encourage people to access the support that I initially didn’t.

Do you think that having a ‘hidden’ condition, compared to one that is considered immediately obvious, has impacted your experiences and treatment?

Depending on the situation, I can sometimes feel a need to either overly justify myself, or just suppress. I tend to feel enormous guilt for making adjustments for my health, such as postponing plans and applying for mitigating circumstances.

Even when experiencing poor health and my requests are entirely reasonable, I think there’s an element of feeling obligated to prove yourself as ‘disabled enough’ when you outwardly present as able-bodied. There is often an unspoken air of disbelief when you ask for an extension, for time off, for a ‘rain-check’ when there seemingly isn’t anything physically wrong with you.

“I tend to feel enormous guilt for making adjustments for my health, such as postponing plans and applying for mitigating circumstances.”

In most cases, hidden conditions aren’t really hidden, they just present differently. ‘Invisible’ health conditions themselves and the side-effects of their medication can cause all sorts of physical-presenting symptoms: hair loss, skin changes, weight changes, sensory changes, the triggering of secondary conditions and more.

Yet, people with hidden conditions can experience verbal harassment in public spaces for accessing facilities they are entitled to use. This happened to me as a teenager in the supermarket toilets, mid-flare-up and in clear discomfort, and it is a truly humiliating experience.

93% of the public who challenge a healthy-looking person for using an accessible toilet think they are “standing up” for the rights of disabled people or that it’s “not fair” on others*

This is not an situation that I want anybody in our university campus to experience, so I hope that my ‘Not all Disabilities are Visible’ campaign (to introduce signage on all accessible toilets across campus) will encourage all to think before passing judgement, and allow disabled students and staff to comfortably access the services they need.

Thankfully, my current employment have always been incredibly flexible with working from home: I was brought on near the beginning of the pandemic and they’ve remained flexible with me during term.

I would hope that workplaces and higher educational settings follow suit in the plan to keep hybrid working an option into the long-term, as it allows many people with health issues to work comfortably and effectively.

How has this impacted your interpersonal relationships?

The intertwining of chronic physical health and mental health is undeniable, and to truly explore the impact of my mental health on relationships would go way over word limit. However I think it’s important to recognise the complexities of it all, and a primary way that my UC influences my interpersonal relationships is through its detrimental effect on my confidence.

Since diagnosis, weight fluctuation and bloating has had an enormous impact on my life. Flare-ups and their after-effects can cause weight changes, and my lower stomach, particularly, can become visibly swollen with inflammation. This will undoubtedly deliver a knock-on effect to my self-esteem, and therefore my eating patterns and behaviours, and so on. It’s a vicious cycle: flare-ups can be triggered by stress, and operating day-to-day with a body in which you feel foreign can be incredibly stressful.

This, obviously, has had an enormous impact on my interpersonal relationships for the past five years, in that I’m constantly hyperaware of how I’m perceived. This has now manifested as an ongoing anxiety issue, but I can certainly recognise a correlation between my IBD diagnosis and dwindling self esteem.

What would you like any new partner or friend to consider, in relation to your condition(s)?

I’d ask for their patience. I’m a far less confident person than I once was and, in interpersonal settings, I tend to either be initially quite reserved or just absolutely waffle to fill the silence.

Visible signs of discomfort or anxiety can often be interpreted as rudeness. I’d want anybody to know that I’m almost never disinterested, but struggle to ‘switch off’ thinking (or overthinking) at times.

If a chronically ill person tells you they are exhausted, don't ask what type of activities they have done to be in this state because there is really no comparison between a healthy persons energy use and a chronically ill persons energy use.

— Laura Spoonie 🦋🌻 (@LauraSpoonie) December 5, 2021

I would also ask for their consideration: I think the highest form of compassion that can be shown to somebody with a health condition is through educating yourself on that issue. Taking the time to do the research and better show support is absolutely invaluable. I’d hope for anybody entering in my life to acknowledge and accept all of me, including the ‘hidden’ conditions that I live with.

What advice would you give to your younger self, or anybody else struggling now?

I had a very uncomfortable relationship with myself in the time following my diagnosis and, for a very long time, I had a real identity crisis with the concept of disability. This was probably heightened due to the embarrassing nature of some symptoms, and the stigma that I thought I’d face by being open about my condition.

However, developing open communication about my health conditions with the people in my life has been the best thing for me. My greatest advice would probably just be to be honest. If you’re not doing well, talk about it. Nearly everybody I’ve opened up to about my health has shown me kindness and understanding.

Even if you don’t want to talk to a real person, write in a journal. Record yourself or use voice memos. If you’re the creative type, channel your emotions into your art. Don’t keep your difficult feelings inside to fester, and remember that you are so very loved.

---

For signposting and wellbeing advice, please visit the Leicester Union website.

To learn more about Ulcerative Colitis, please visit the Crohns and Colitis UK website.

Ella Johnson is a MA Digital Media & Society student and English graduate, currently acting as LSM President and Lifestyle Editor. She is interested in current affairs and pop culture.

---

*sourced from Crohns and Colitis UK