Latest news with #invisibleillness
WebMD
18-07-2025
- Health
- WebMD
10 Things I Wish People Knew About Life With Psoriatic Arthritis
When I first heard the words 'psoriatic arthritis,' I didn't fully understand how much it would change my life. Like most people, I thought arthritis was something that happened when you were older. I assumed it was mostly about hand pain, maybe stiff knees, a little trouble getting up in the morning, nothing too life-changing. But what I've come to learn is that psoriatic arthritis is a full-body, life-altering, invisible illness that reshapes how you move through the world. And honestly? Most people don't really understand it. I don't say that with bitterness. I say it because I used to be one of those people. And now, after years of living with PsA, I find myself wishing there was a little more awareness, a little more patience, and a little less guessing. Here are 10 things I wish people knew about life with psoriatic arthritis. 1. It's More Than Just Joint Pain When people hear 'arthritis,' they tend to picture sore knees or aging hips. They don't picture someone in their 20s struggling to open a water bottle or hold up a gallon of milk. Psoriatic arthritis affects my whole body. The joint pain is real and it shows up in my hands, my knees, my spine, but it's only one part of the story. PsA also comes with skin flares, tendon pain, eye inflammation, brain fog, and fatigue so heavy it feels like gravity tripled overnight. I remember one morning when I couldn't button my jeans because my hands just wouldn't work. I sat on the floor and cried, not because of the pain, but because I couldn't even get dressed by myself. No one prepared me for the everyday ways my body would start working against me and how much more help I would need. 2. It Can Happen at Any Age When I tell people I have arthritis, I often get the same surprised reaction: 'But you're too young to have that!' Psoriatic arthritis doesn't check your birthdate before it shows up. I was diagnosed in my 20s, at a time when I was supposed to be building momentum, chasing opportunities, and saying yes to life. Instead, I was learning how to pace myself and how to sit with loss. I get why people are surprised because our culture tends to associate arthritis with the elderly. But chronic illness doesn't have an age limit. Sometimes, it walks into your life just as you're getting started. 3. It's an Invisible Illness Some days, I can look completely fine while my body is quietly unraveling underneath. One time I pushed through a brunch with friends while my hips and lower back were screaming. I smiled through the meal, made small talk, but spent the entire time wondering if I'd be able to walk back to my car without limping. PsA is invisible. You can't see my pain, you can't see my fatigue, and that can make it harder for people to understand. There's no visual marker that says, 'This is hard for me today.' Sometimes, the hardest part isn't the pain, it's accepting my limitations. 4. Fatigue Is Not Just Being Tired There's tired, and then there's psoriatic arthritis fatigue. This isn't the kind of tiredness that a nap can fix. It's a deep, body-wide exhaustion that can sneak up without warning and without a reason. I've had days where brushing my hair felt like a full workout. I've had days where I couldn't keep my eyes open after a simple grocery run. Often, I sit in my car gathering the energy just to go from the car to the front door. The worst part? Sometimes I'll wake up even more tired than when I went to bed. There's no guaranteed reset from even the best sleep. 5. Flare Days Are Real I wish people understood how wildly unpredictable psoriatic arthritis can be. One day, I can feel almost normal. The next, I might not be able to get out of bed. The swings are fast, and they don't always give warning. I've had to cancel plans at the last minute, leave grocery carts half-full, and cut workdays short because a flare came out of nowhere. It's not about flakiness, it's about a body that makes the rules without telling me. I have to adapt accordingly and fast. Sometimes I feel guilty or angry, but mostly I just wish my body would keep me in the loop. 6. The Mental Toll Is Heavy Living with PsA is more than a physical challenge. It's also an emotional one. There's grief over the things I've had to let go: hobbies I can't do anymore, spontaneous trips I no longer plan, long walks I have to think twice about. There's anxiety about when the next flare will hit. Wondering if my medication will stop working or worrying if I will be OK the day of my wedding. Will I be able to dance that day? Or will I be sitting that one out? I've sat with this grief quietly. I've cried in parking lots. I've worked hard to find joy where I can. Therapy, community, and honest conversations have helped, but this is a mental load I carry every day. 7. Medications Help, but They're Not Magic When people hear I'm on medication, they sometimes assume I'm 'better.' I understand why — it's comforting to believe that medicine fixes things. But the truth is medications can help manage symptoms, but they don't cure psoriatic arthritis. Even on the best days, I'm still working around pain, stiffness, and fatigue. Finding the right medication is often a long, exhausting process. I've switched treatments, dealt with side effects, waited months for something to finally (maybe) work. There's progress, but I'll never be back to 'normal.' 8. It Can Impact Work and Relationships PsA doesn't clock out at 5 p.m. It touches every part of life. I've worried about being seen as unreliable when I needed to take time off or calling out sick too much. I've fought with companies to get accommodations that allow me to do my work. I've watched friendships slowly fade because I had to say 'no' too many times in a row. But I've also been lucky to have people who stayed. Friends who texted 'no pressure, but I'd love to see you.' Co-workers and managers who believed me. Those people have made all the difference. 9. Self-Advocacy Is Constant Living with psoriatic arthritis means I have to speak up for myself — a lot. Whether it's asking for accommodations, pushing for treatment approvals, or simply explaining what I need to my partner, self-advocacy has become part of daily life. Sometimes it's empowering. Other times, it's exhausting. I've had to fight insurance companies, challenge assumptions, and remind myself that I'm worthy of care. There's a weight to always having to explain yourself, but the more we talk about it, the easier it becomes for the next person. 10. What Actually Helps People often ask how they can support someone with a chronic illness. The answer is simple: Believe us. Believe us when we say we're tired, even if we look fine. Believe us when we cancel plans, even if we were OK yesterday. Believe us the first time we say we're struggling. What helps the most isn't grand gestures – it's flexibility, patience, and the quiet message that we're not a burden. A 'thinking of you' text. An invitation with no pressure. A friend who sticks around. Those small things are what carry me on the hardest days. Final Thoughts Living with psoriatic arthritis has changed me. It's slowed me down in ways I didn't expect. It's taught me to listen to my body, to be patient with myself, and to ask for help even when it's uncomfortable. There's grief in this life, but there's also gratitude – for the people who understand, for the days when my body feels manageable, for the moments I still get to enjoy. If you've made it this far, thank you for taking the time to understand a little more about what life with PsA looks like. And if you're living this life too – I see you, I get it, and you're not alone.
Daily Mail
04-07-2025
- Health
- Daily Mail
Inside Love Island star's agonising health battle with disease that could lead to bowel cancer
Love Island star Toni Laites is known for her brash and honest opinions on fellow cast mates. But beneath the hard exterior, she is battling a devastating condition that puts her at risk of deadly bowel cancer. The 24-year-old from Connecticut in the US, who has seen a rocky romance with co-star Harrison Solomon, was diagnosed with chronic bowel disease ulcerative colitis back in 2017. The disease, which involves severe and painful inflammation in the gut, saw the Las Vegas-based waitress spend the day of her prom in hospital for an emergency blood transfusion in order to save her life. Now, she's appearing on the show in order to 'show viewers that not all illness are visible, but they don't have to hold you back,' she said in a recent interview with ITV. Common symptoms of the condition, which affects around 300,000 people in the UK, include debilitating diarrhoea, abdominal pain, extreme tiredness, loss of appetite and weight loss. Symptoms can also worsen and affect other parts of the body causing fat to swell under the skin, painful joints and even weakened bones. Most concerningly, patients also have an increased risk of bowel cancer, with the risk becoming more severe the longer a patient has lived with the disease. The severity of symptoms can vary depending on how much of the rectum and colon is inflamed. For some people, it can have a significant impact on their daily lives, the NHS says Living with the condition for 30 years can increase the risk of bowel cancer by 18 per cent, according to studies. Around 32,000 cases of bowel cancer are diagnosed every year in the UK, with rates of the deadly disease surging in under 50s. Before entering the Love Island villa, Ms Laites, who goes by Toni, admitted that she made headlines in local newspapers at 17-years-old after opening up about her condition. She told ITV: 'I had to go to hospital the same week as my senior prom for an emergency blood transfusion. 'Nothing that exciting happens in Connecticut, so it was a big deal and a few articles were written about me.' While Ms Laites didn't say why she needed the transfusion, colitis patients are at an increased risk of developing anemia—a severe deficiency of iron in the blood that can cause life-threatening problems. This happens due to inflammation in the large intestine that can prevent the body from absorbing iron properly, as well as internal bleeding caused by the disease. A blood transfusion is the most common treatment for severe anemia. According to the UK Crohn's and Colitis UK charity, the disease is most often diagnosed in people aged between 15 and 25. While the condition cannot be cured, treatment can help relieve symptoms during a flare-up and prevent symptoms from returning. This can be achieved through drug treatments, but in some cases surgery—which involves removing some or all of the bowel. This involves the small intestine being diverted out of an opening in the abdomen known as a stoma. This surgery can also be used to aid recovery following the removal of any cancerous cells from the bowel. Ms Laites' story comes amid a surge in bowel cancer cases in young people—many of who are perfectly fit and healthy. While research is yet to identify a specific smoking gun, groups of scientists have posed a variety of theories, including rising obesity levels, poor diets and microplastic pollution. Common symptoms of the disease include needing to go to the toilet with more urgency, rectal bleeding, blood in the stool—which may appear red or black in colour—and change in consistency. Some patients may also experience abdominal pain, bloating and unexplained weight loss. According to the NHS, many ulcerative colitis sufferers are often unaware they also have bowel cancer, as the initial symptoms are very similar. However, people with the condition will be offered regular check-ups to look for tell-tale signs of bowel cancer, helping doctors diagnose the disease early. Overall, just over half of bowel cancer patients are expected to be alive ten years after their diagnosis, with 90 per cent of people diagnosed at stage 1 surviving for at least five years. It comes as ulcerative colitis patients are set to benefit from a new drug that can eliminate debilitating symptoms in just three months The once-a-month jab deliver a drug that binds to immune cells that cause the damage, significantly reducing symptoms. Earlier this month, the drug safety watchdog, the Medicines and Healthcare products Regulatory Agency, gave the green light for guselkumab to be prescribed in the UK to patients who have failed to respond to other treatments.
Globe and Mail
15-06-2025
- Health
- Globe and Mail
The hidden toll of chronic migraine on workers and companies
This is the weekly Work Life newsletter. If you are interested in more careers-related content, sign up to receive it in your inbox. One of Maya Carvalho's worst migraines lasted nine days. 'I was completely bedridden,' she says. 'My pain was so intense it felt like if I moved my head an inch, it would crack open.' She had been thriving in a high-powered role at a multi-national beauty company in New York City when migraine suddenly entered her life. 'It hit me out of the blue,' she says. 'I hadn't had migraines before, not even as a kid.' Almost overnight, what started as one attack escalated into chronic migraine – defined as 15 or more migraine days per month. 'I knew I couldn't perform at the level I wanted to. And there was no conversation about accommodations, no awareness that migraine was a disease. So I had to walk away [from my job],' she says. 'It was devastating.' A costly, invisible disease Today, chronic migraine affects an estimated 1-2.2 per cent of the global population while migraines affect 12 to 15 per cent, with women more likely to be affected. According to the World Health Organization, a day with severe migraine is as disabling as a day with quadriplegia. That's why Toronto-based Ms. Carvalho, who is the founder of the Canadian Migraine Society, is passionate about helping workplaces understand the full weight of this invisible neurological disease. Migraine is often more than head pain. It can involve light and sound sensitivity, nausea, vomiting and vertigo. 'Each person has their own constellation of symptoms,' Ms. Carvalho says. 'But the pain is intense. I've had women tell me it's worse than childbirth.' The productivity paradox From a business perspective, migraine is a silent disruptor. Ms. Carvalho says employers often focus on absenteeism, but presenteeism – when employees are present at work, but not functioning at full capacity because of pain or other issues – may be even more costly. '[Presenteeism] affects productivity, and often leads to isolation and mental health struggles,' she says. Yet, with a few simple, low-cost changes, workplaces can make a difference. Scent-free policies, anti-glare screens, quiet spaces and flexible work options can be game-changers, she says. 'Even just letting someone work from home one day a week can help,' she says. Ms. Carvalho also urges HR teams to review their benefits plans. 'Making sure that the newest migraine treatments are covered can prevent the disease from escalating,' she says. 'We wouldn't have to keep watching women leave the workforce at their peak.' Workplace equity at stake For Ms. Carvalho, supporting people with migraine is about more than healthcare – it's about fairness. 'This is a work equity issue,' she says. 'Supporting those with chronic migraine isn't charity. It's smart business.' Her message to those experiencing chronic migraine is clear: 'You are not alone, and there is absolutely hope for you. We'll walk this journey with you – it doesn't have to be this hard.' 30 per cent That's how many of the menu items Starbucks plans to cut, while adding new trendier offerings such as protein cold foam, which offers 15 grams of banana flavoured, muscle-building goodness. Read more Feedback is key to employee development but, according to this article, it's effectiveness depends on timing. Research suggests mornings are best, as most people are more alert and receptive earlier in the day because of natural circadian rhythms, which influence sleep-wake cycles, hormone production and body temperature. Read more 'If someone comes to me and says they're raising a million dollars, I'll ask right away, 'How long does that get your company through?' If they cannot tell me that it's around 24 months, or even a bit more, we have to restructure the round completely,' says Mary Dimou, general partner at Nàdarra Ventures. In this article, capital investment pros share how you can raise capital during uncertain times, emphasizing proactive communication, strategic timing and pivoting your message when it's not landing. Read more 'Canadian‑made' isn't just a nice‑to‑have; it's a smart strategy. More companies are going local to connect with consumers who care about ethics and sustainability. The bonus? Leaner supply chains, honest branding and a tighter bond with customers. Read more
Mail & Guardian
12-06-2025
- Health
- Mail & Guardian
Workplaces must wake up to the harmful invisibility of endometriosis
One in 10 women suffers from endometriosis, but workplaces seldom recognise this debilitating condition. Photo: Pexels/Anna Shvets In a country grappling with gender equity, rising workplace absenteeism, and the push for inclusive labour policies under the Basic Conditions of Employment Act (BCEA), endometriosis remains an overlooked crisis, one that silently undermines South Africa's efforts to create humane, productive and equitable workplaces. 'You don't look sick,' is a phrase women with endometriosis hear way too often at work, at home, in doctors' offices and sometimes from themselves. In conversations with others navigating endometriosis, a recurring theme emerges: the overwhelming burden of managing pain in silence, often while trying to meet workplace expectations. Many speak of being expected to justify absences long before receiving a diagnosis, as if their health problems were inconveniences rather than legitimate concerns. These experiences show how invisible endometriosis remains in the workplace, not just in terms of physical pain, but also the stigma and lack of accommodations that quietly shape career trajectories. And behind that invisibility lies one of the most debilitating and misunderstood health crises affecting working women today. Endometriosis is a condition where tissue similar to the uterine lining grows outside the uterus. It affects roughly one in 10 women globally. That's millions silently battling chronic pain, fatigue and infertility. In South Africa, where access to specialist care is uneven and healthcare resources are strained, many women face even longer delays in diagnosis and appropriate treatment. Research shows that it takes seven to 10 years to get a diagnosis. During that time, many women are gaslit, misdiagnosed or dismissed. The consequence? Careers cut short, dignity eroded, jobs lost and health quietly sacrificed on the altar of workplace performance. This structural mismatch between what employees need and what workplaces demand creates a dynamic where women feel pressured to mask their pain to avoid stigma, job loss or being labelled as unreliable. This is especially damaging in sectors where sick leave is tightly controlled, or in precarious work environments with little room for flexibility. The unpredictable nature of endometriosis flare-ups makes consistent attendance and productivity difficult. Missed promotions, unfair performance reviews, or job losses are not uncommon. This undermines employment equity, not only along gender lines but also class and health lines. At many workplaces, 'diversity and inclusion' is reduced to a wellness day or a motivational speaker. But for employees doubled over in pain, that kind of tokenism is not support, it's avoidance. Chronic illness remains the elephant in the boardroom. South Africa's progress toward workplace transformation, through broad-based black economic empowerment and equity laws is commendable. But to be truly inclusive, policies must also account for the experiences of those managing chronic, often invisible health conditions such as endometriosis. This gap signals the need for a more intersectional approach to workplace equity. A framework for change To end this cycle, here is a four-part framework South African workplace can adopt immediately 1. Policy reform: Recognise chronic illness in HR and organisational policies. Review BCEA provisions in relation to long-term, fluctuating conditions like endometriosis. 2. Flexible work options: Enable remote work, adjustable schedules, and rest breaks during flare-ups, especially important in South Africa's mixed rural-urban labour economy. 3. Manager education: Train supervisors to replace scepticism with empathy. Awareness reduces stigma and improves productivity. 4. Support systems: Create access to mental health resources, safe disclosure channels, and peer support groups. These are low-cost interventions that are effective. I explore this framework in detail in my recent article which you can read When flare-ups hit, routine tasks become mountains. Without proper support, women are forced to choose between health and income. For South Africa, where high unemployment, youth joblessness and gender inequality already intersect, this is an unacceptable trade-off. Endometriosis is not just a medical condition, it's a workplace issue. One that demands recognition under policies and labour codes, and inclusion in discussions around productivity and well-being. If we claim to care about transformation, dignity, and decent work, we must move beyond superficial gestures. It's time to stop brushing off pain that doesn't show on a scan and start building workplaces that are compassionate, inclusive, and prepared for reality. Endometriosis is real. Women's pain is real. It's time our policies, leaders, and workplace cultures responded like it. Zimkhitha Juqu is a researcher, published and cited author interested in gender, health equity and workplace inclusion.
Daily Mail
31-05-2025
- General
- Daily Mail
EXCLUSIVE Alarm over fit young women with silent 'old people' disorder... and the terrifyingly common cause
They appear to be the picture of health - young women in the prime of their youth with glowing skin and fit physiques. But, for a growing number quietly struggling with a crippling 'invisible' condition usually associated with old age, looks can be deceptive. Your browser does not support iframes.
