Rare, chronic, invisible: putting a face on disabilities and illnesses
Rare, chronic, invisible: putting a face on disabilities and illnesses
Sooner or later might come a time when disabilities affect us personally. The probability of experiencing some form of physical impairment in our lives is actually quite high. Even stars, athletes or politicians are not immune to it. It helps "normal" mere mortals if they share their illness with a popular celebrity. That’s when they draw the kind of attention they would not get otherwise – especially when it comes to rare and/or chronic diseases.
When famous personalities fall ill, the social sympathy is usually great. People with chronic illnesses in particular benefit when "their" illness gets a familiar face.
If you had Googled the name Selma Blair back in 1999, you would definitely not have gotten the search results you get today. These days, the actress who gained fame with the movie "Cruel Intentions" - released in movie theaters that same year - is making headlines by opening up about living with multiple sclerosis. Ever since she walked the red carpet with a cane at an Oscar party in February 2019, she has been the personification of strength, courage, and resilience in Hollywood. On her Instagram channel, she gets candid about her illness and shares the effects of chemo and stem cell therapy. She poses with no hair and delivers insights into the obstacles she faces every day due to multiple sclerosis. She also openly discusses her illness in interviews.
She waited seven years before she finally got an accurate diagnosis in 2018. She greeted the diagnosis with relief, but also grief and shock. But the latter didn’t take long and she was determined to fight the disease with everything she has. There is a reason MS is often called “the disease of a thousand faces” since it is not an easy disease to diagnose. Having said that, most people have heard about multiple sclerosis along the way. This is not the case when it comes to rare diseases. In this case, it can take 15 years on average before a person gets an accurate diagnosis and even that might depend on coincidence. That’s why people affected need an ambassador who lends a sympathetic ear to their concerns and represents them in public. For the past 15 years, ACHSE e.V. has done so in Germany. Find out about the German Alliance of Chronic Rare Diseases and the role members of the umbrella organization such as NAMSE play in our article "Better care and networking: how networks fight for people with rare diseases."
Life with a chronic illness is a particular challenge for children and adolescents. Programs such as the KfH's "finally adult" programme are designed to help them to deal responsibly with their illness and also to find like-minded people.
Growing up in difficult circumstances
Some of Selma Blair’s photos on Instagram include her son, for whom she wants to be strong, as she points out in interviews. Chronically ill parents are not the only ones who need to be strong for their children. Parents of chronically ill children must also be willing to fight. A chronic illness goes along with regular office visits to physicians and specialists. This is an enormous burden, especially on children and young adults and often involves multiple absences in school and sometimes bullying as classmates don’t appreciate illness-related absence and/or any special treatment. Apart from that, children with chronic diseases have a hard time finding a school in the first place. These are just some of the difficulties families and those affected face on a daily basis. These battles require tenacity and endurance and can take a toll on all parties involved.
Once you have overcome these hurdles, there are still the issues you face growing up. Learning to take charge of your disease without the help of your parents is not an easy feat, especially in times of hormonal changes. Nearly ten percent of young adults in Germany live with chronic illness. For those affected by kidney disease, there is the KfH transfer program titled "endlich erwachsen" (English: finally grown up). Program participants between the ages of 16 and 21 can learn to take charge of their illness over the course of three years and improve their health literacy with the help of multiple learning modules. Not only do participants grow their confidence in managing their disease, but it also enables them to connect with people who are in the same boat, allowing them to compare notes about the condition they share.
And sometimes it just helps to know that you are not alone. The "Körperstolz" campaign (English: body pride) by the German Medical Technology Association (BVMed) features patients who live a full life with chronic illness. The campaign aims to raise awareness about the difficulties of living with diseases and calls attention to the importance of medical devices for a self-determined life. After all, many of those affected are often ashamed of the relevant resources and tools that actually make it possible for them to live a relatively normal life. The Association also wants to break the taboo of talking about this specific issue and aims to build up self-confidence of those living with chronic illness.
Although they are rare, they affect 300 million people worldwide. In other words, rare in this case actually means quite a lot of people but you can’t always tell just by looking at them.
Self-help on social media
But no matter how confident a person is in coping with a chronic illness, everyone still has moments when they feel weak and helpless. The time until you get a diagnosis or the time immediately after can make people fall into a deep, dark hole. On her blog honigperlen.at, Melanie Pignitter describes ways to climb out of this hole again. The certified mental coach lives with chronic headaches. Just like Selma Blair, she has found a way to manage her illness and still live a full life. Others affected also take a candid approach to their diagnosis. Social networks offer a platform and place to turn to for affected persons. Find out how various social media channels help raise awareness and make illnesses tangible for others and learn how being candid about their disease can impact other people's lives, in our article "How Social Media connects people with invisible disabilities and a chronic illness."
Many organizations are not only dedicated to raising awareness among society for people who live with rare diseases, they are also committed to providing better help and support. These bodies are important for those affected because they are a safe haven where people understand you without you having to explain yourself as you find support and connect with others. Yet these organizations also help make sure the voices are heard. "There are many types of disability and people with disabilities don’t all have the same needs," Petra Wontorra, state official of Lower Saxony for people with disabilities stated in a press release earlier this year. Associations like ACHSE or NAMSE try to reduce barriers for people with rare diseases, set a political agenda for their needs and help improve their status and place in society. "That's why it's so important for experts for their own cause - people with and without visible disabilities and their representatives – to participate in the political decision-making process and share their perspectives and insights. Accessibility implementation must factor in all types of disabilities and impairments," Wontorra emphasizes the importance and significance of these special interest groups.
Personal stories like the one shared by Selma Blair help raise awareness of the toll of chronic, invisible and rare diseases. Although they are rare, they affect 300 million people worldwide. In other words, rare in this case actually means quite a lot of people but you can’t always tell just by looking at them. Yet they all have a right to fully participate as equal members of society. That’s why Petra Wontorra underscores that "all human beings – regardless of whether they have a visible disability or not - have the right to be treated with dignity and respect."
Anne Hofmann (Translated by Elena O'Meara) REHACARE.com