About me, Michelle

• Founder and administrator for the Cardiff-based group, Sweet’s Syndrome UK. This is a group that was founded in 2012 to help those with the rare autoinflammatory condition and neutrophilic dermatosis, Sweet’s syndrome.
• I have had Sweet’s syndrome for over 20 years.
• From March 2013 – Sept. 2014, I was a Co-founder & Author for the US-based Sweet’s Syndrome Awareness Campaign. This campaign was solely run by Rhonda Wood Negard from Sept. 2014 until its termination in Dec. 2015.
• I worked as a RN for 15 years.
• In 2012, I researched the first UK Sweet’s syndrome patient-information-leaflet for the British Association of Dermatologists – also available via the Irish Skin Foundation.
• In 2012, I wrote the first UK Sweet’s syndrome professional nursing article for the ‘Nursing Times’ journal.
• I am Administrator for Sweet’s Syndrome UK HealthUnlocked.
• I was a member of the charity, Skin Conditions Campaign Scotland (SCCS), and acted as the Sweet’s syndrome patient representative for Scotland from November 2014 until the closure of SCCS on 31st July 2017.
• My other activities include or have included volunteering for the following charities and organizations: The British Skin Foundation, Action on Hearing Loss, and the British Medical Journal.

The following blog post describes my experience of Sweet’s syndrome.

In my mid-twenties, I was diagnosed with the rare autoinflammatory condition and neutrophilic dermatosis, Sweet’s syndrome (SS), but may have first developed the condition at twelve or thirteen years of age. SS is a condition that commonly causes painful skin lesions, fever and fatigue that may be debilitating. There are numerous other symptoms that people with SS may or may not develop, and the condition can sometimes make an individual seriously ill, potentially affecting internal organs such as the brain, heart, lungs and spleen. SS can develop secondary to other conditions, and in approximately 20% of patients develops secondary to some form of cancer, the commonest being myelodysplastic syndromes and acute myeloid leukaemia.

While/after being diagnosed with SS, day-to-day life became increasingly difficult. Not only did I have to deal with the autoimmune condition, rheumatoid arthritis (since age eighteen), that had left me with permanent joint damage, but the physical symptoms of SS. This was incredibly hard as not even my own dermatologist fully understood my condition, could tell me what my symptoms would be, or provide me with any advice or information about SS. Due to this lack of understanding I was left to fend for myself, most doctors refusing to acknowledge how serious my condition was, sometimes being rude, insulting and dismissive. I was also not prepared for the ignorance and mistreatment I would face from friends, family members, work colleagues and strangers in the street.

There was a tendency for others to try and minimize my skin lesions, even though they were painful, large and made me feel very self-conscious. This was often a misguided yet well-meant attempt to make me feel better about my appearance, but not always. Sometimes I was treated as if my lesions were more of a bother to others than me. For example, friends wanting me to shop or socialize should take priority over how I felt. I would be told in a curt and annoyed way that my lesions weren’t that bad, that things could be worse, or maybe I should just ‘Get over it!’ As many of my lesions were on my face and highly visible, I was verbally abused by strangers in the street, ridiculed by shop assistants, and insulted by patients and visitors at work. Even some of my work colleagues, including fellow nurses, would make nasty comments about my looks, and lies were spread about me in regards to what condition I really had. My colleagues ‘diagnoses’ included fibromyalgia, chronic fatigue syndrome, stress, depression or some other kind of mental health problem, or a few pimples that I was simply making far too much of a fuss about. I was shocked at how many health professionals prefer to believe that rare conditions must be ‘all in your head’, rather than accept that someone can have an unusual condition that very few understand. The unfamiliar so scary and inconvenient that’s it’s better to believe it doesn’t exist.

Over time, isolation became more and more of a problem. My physical appearance and the repeated verbal abuse that I was being subjected to had a negative effect upon my self-confidence and desire to go out. Some people assumed that my skin lesions were infectious and were reluctant to associate with me. When visiting my G.P clinic I was repeatedly segregated from the other patients, even after explaining time and time again that my condition could not be ‘caught’.

There’s a common myth that skin conditions are nothing more than a minor irritation. My SS has caused painful skin lesions, high fever, persistent exhaustion, muscle pain, joint pain, repeat episodes of non-infectious conjunctivitis, and mouth ulcers. I’ve also struggled with the side-effects, sometimes very serious side-effects of medication – hallucinations, anaemia, nausea and vomiting, to name but a few. This didn’t change the fact that I was just lazy in the eyes of some people – a liar, selfish, a killjoy. I could be reluctant to attend social and family events because of my appearance, but most of the time I was simply too sick. One family member ‘forgave’ me for not going to a wedding I wasn’t well enough to attend. They made it quite clear that my suffering was irrelevant, refusing to acknowledge the severity of my condition.

Unfortunately, it’s not unusual for people to display negative attitudes towards those with rare conditions. This can happen because of prejudice against those with health problems and disabilities in general, often being viewed as idle malingerers or a financial drain on society. Another reason is a lack of understanding of rare conditions amongst both health professionals and the general public. This lack of understanding can include the false belief that rare conditions can be easily cured with exercise, a special diet or some kind of alternative therapy. This results in people adopting the opinion that patients with rare conditions are layabouts and whiners who are choosing to be ill. Their reluctance or refusal to use an alternative method of treatment is seen as a sign that they don’t want to get better, even when there’s no medical evidence to support the efficacy or safety of a treatment. When they do try these alternative therapies and they don’t work or make a condition worse, they’re then accused of not doing things properly or told that they need to persist. Horrifyingly, some patients are being told that getting worse is a sign that the therapy is working, i.e. it’s a sign that ‘toxins’ causing the condition are leaving the body, so you have to push on with it. If you do push on with it then you continue to deteriorate, but if you don’t, you’re choosing to be ill. It’s this kind of attitude that encourages a particularly nasty culture of patient-blaming, where patients are blamed for being ill and having a condition that they didn’t choose to have. From a personal point of view, I found myself continuously struggling with these sorts of attitudes. As well as people repeatedly making ‘helpful’ suggestions or trying to bully me into buying the latest miracle supplement, I still remember when a family member told me that I was only ill because I was lazy and hadn’t tried hard enough to find a cure. There is no known cure for SS. On another occasion, an unsupportive senior work colleague suggested that I simply ‘get fit’ to resolve my health condition. SS isn’t caused by a lack of fitness, but errors in the innate immune system or this part of the immune system not always working in the way that it should.

Continuing to work became increasingly difficult. As a nurse, I had sincerely hoped for better from my fellow health professionals, but instead of being supported, I was bullied for having a condition that others didn’t understand, and facing potential job loss because of it (wanted a healthy nurse that could work long hours without breaks, didn’t have to take sick leave, or attend healthcare appointments). This would have resulted in homelessness as I needed a wage to pay my rent. This meant that I had no choice but to tolerate the bullying, and continue caring for hospital patients when I was so ill that it wasn’t always safe for me to do so. My only alternative was to live on the streets, and sadly, I’m not the only person with SS that has faced financial difficulties and potential homelessness because of having a rare condition. In my case, I didn’t claim benefits, but there are people with rare diseases, including debilitating or potentially life-threatening diseases, that are being denied the disability-related benefits they should be entitled to. This often happens because of an inadequate or gruelling and humiliating assessment process, poor or no understanding of a rare condition, and it not being recognized by the benefits system. This then leads to hardship and sometimes destitution.

Today, my SS is much improved, but I’m still concerned that people are struggling in their day-to-day lives because of the ignorance and negative attitudes of others. SS is not a condition that someone chooses to have or can make themselves have, it cannot be cured with diet, alternative therapies or simply by getting fit, and patients with SS don’t deserve to be treated badly because of something that isn’t their fault. In the future, let’s hope that with improved awareness and education, more people will start to show a bit more understanding and compassion towards those with SS, other rare conditions, and conditions that affect the skin. Maybe then we will be on the path to bringing this damaging culture of patient-blaming to an end.

Thank you for reading.

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