- Michelle Holder is the Founder, Administrator & Researcher for the Cardiff-based patient advocacy group (PAG), Sweet’s Syndrome UK. This is a group that was founded in 2012 to help those with the rare autoinflammatory condition, Sweet’s syndrome.
- She has had Sweet’s syndrome for over 20 years.
- From March 2013 – Sept. 2014, she was a Co-founder, Researcher & Author for the US-based Sweet’s Syndrome Awareness Campaign. This campaign was solely run by Mrs. Rhonda Wood Negard (Fat Dog Creatives, graphic design & photography) from Sept. 2014 until its termination in Dec. 2015.
- She is a former registered nurse, and worked as a Staff nurse for almost 15 years in a number of different areas.
- In 2012, she 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, she wrote the first UK Sweet’s syndrome professional nursing article for the ‘Nursing Times’ journal.
- She is administrator for Sweet’s Syndrome UK HealthUnlocked.
- She is a member of the Scottish charity Skin Conditions Campaign Scotland and has acted as the Sweet’s syndrome patient representative for Scotland since Nov. 2014.
- Her 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.
Read more @ LinkedIn.
The following blog post describes Michelle’s experience of Sweet’s syndrome (originally posted on social media, 2013).
‘In my mid-twenties, I was diagnosed with the rare autoinflammatory condition Sweet’s syndrome (SS), but may have first developed some symptoms at twelve or thirteen years of age. SS is a condition that most commonly causes painful skin lesions, but not always, and also fever, and fatigue – a medical term that includes a number of different symptoms. However, there are numerous other symptoms that people with SS may or may not develop, and sometimes the condition can make an individual seriously ill or even be life-threatening, causing inflammation throughout the body with lesions potentially developing in internal joints and organs. SS can also develop secondary to numerous other conditions, and in approximately 25%* of patients develops secondary to blood disorders and cancers, e.g. myelodysplastic syndromes and acute myeloid leukaemia.
After being diagnosed with SS, day-to-day life became increasingly difficult. Not only did I have to deal with rheumatoid arthritis which I had developed at age eighteen, and left me with permanent joint damage and often exhausted and in severe pain, but also 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, and most doctors refused to acknowledge how serious my condition was, often being rude, insulting and dismissive. I was also not prepared for the ignorance I would face from friends, family members, work colleagues and strangers in the street.
To begin with, 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. Sometimes, this was a misguided yet well-meant attempt to make me feel better about my appearance, but not always. In fact, I was often treated as if my lesions were more of an inconvenience to others than me, for example, others wanting me to go out so they could shop or socialize should take priority over how I felt. As a result, I was frequently told in a curt and annoyed way that my lesions weren’t that bad, that things could be worse, or that maybe I should just ‘get over it!’ Also, as many of my lesions were on my face and highly visible, I was often verbally abused by strangers in the street, ridiculed by shop assistants, and as I worked as a staff nurse, was sometimes insulted by patients and their visitors. Even some of my work colleagues would make insulting, inappropriate and callous comments about my looks, and lies were spread about me in regards to what kind of condition I might ‘really’ have. Conditions that some of my colleagues ‘diagnosed’ me with 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. It was then that I realized how many people prefer to believe that rare conditions are made-up conditions or that they must be ‘all in your head’, rather than admit to the fact that some people will have unusual conditions that very few understand. It’s almost as if when people are faced with something new then they don’t want to deal with it, and the way in which they avoid dealing with it is by choosing to believe it doesn’t exist.
Over time, isolation became more and more of a problem too. My physical appearance and the repeated verbal abuse that I was being subjected to had a profound negative effect upon my self-esteem, self-confidence and desire to go out. Also, 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’.
Another difficulty I faced was that many people are of the opinion that conditions that affect the skin only affect the skin, or are nothing more than a minor irritation. My SS has caused painful skin lesions, fever, exhaustion that you can’t ‘shake-off’ and other symptoms of fatigue, arthritis, muscular pain, eye problems, and painful mouth ulcers. I have also struggled with the side-effects, sometimes very serious side-effects of medication. Despite this fact, some people still refused to acknowledge how ill I was, and persisted in treating me as if I was a liar, lazy, selfish, and a kill-joy. In regards to the latter, I was sometimes reluctant to socialize or attend social and family events because of my appearance, but most commonly because I was simply just too ill. Nevertheless, this did not stop others from deciding that I was nothing more than an antisocial, self-centred malingerer who didn’t care about anyone but myself. One family member even felt they had the right to forgive me for not going to a wedding that I was much too ill to attend. Once again, this demonstrates how some people point-blank refuse to believe that conditions affecting the skin can be anything more than a minor irritation, choose to believe that rare conditions don’t exist, or be of the opinion that those with health conditions shouldn’t behave in a way that’s inconvenient for them.
Unfortunately, it really isn’t unusual for others to display negative attitudes towards those with rare conditions. This can happen because of prejudice against those with health problems and disabilities in general, these people being viewed as malingerers or a financial drain on society, and it is an attitude that seems to be growing in the UK. However, it commonly happens because of a lack of understanding of rare conditions amongst both health professionals and the general public. This lack of understanding can also include an inaccurate and misguided belief that rare conditions can be easily cured with a special diet or some kind of alternative therapy. As a result of this belief, people can adopt the idea 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 do not want to get better, even though there will be no medical evidence to support the efficacy or safety of a treatment. When rare disease patients do try these alternative therapies and they don’t work or make a condition worse, they are then accused of not doing things properly or told that they need to persist. On top of that, they are often lied to and told that getting worse is a sign that the alternative therapy is working, e.g. getting worse is a sign that ‘toxins’ are leaving the body or a case of having to get worse before you get better, and therefore you have to push on with it. If you don’t push on with the therapy, then once again, you are choosing to be ill. This kind of attitude then encourages a particularly nasty culture of ‘patient blaming’, where patients are blamed for being ill and having a condition that they did not 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 attempting to pressurize or bully me into trying the latest ‘miracle’ diet or supplement, I still remember when a family member cruelly told me that I was only ill because I hadn’t done enough to help myself or tried hard enough to find a cure. There is no known cure for SS! On another occasion, an annoyed and unsupportive senior work colleague suggested that I simply ‘get fit’ to resolve my health condition, despite the fact that SS is not caused by a lack of fitness but errors in the innate immune system.
Continuing to work also became increasingly difficult. As a staff nurse, I had sincerely hoped for better from my fellow health professionals, but instead of being supported I was bullied for having a serious condition that others didn’t understand, and facing potential job loss because of it. This would have resulted in homelessness as I wouldn’t have had the money to pay my rent. This meant that I had no choice but to tolerate the bullying and humiliation, and continue caring for hospital patients when I was so ill that it was not safe for me to do so. My only alternative was to live on the streets, and sadly, I am not the only person with SS that has faced financial difficulties and potential homelessness because of having a rare condition. And even though I did not claim disability-related benefits, those with rare diseases, including incredibly debilitating or potentially life-threatening diseases, are often denied benefits. This most commonly happens because of a poor or no understanding of their condition, and it not being recognized by the benefits system. This then leads to hardship and sometimes destitution.
Today, my SS is far less severe than it once was, but I am still concerned that others 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 do not deserve to be judged and treated badly because of something that isn’t their fault. But on a positive note, 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.
Thank you for reading.’
* Recent research now shows that 15-20% of patients develop Sweet’s syndrome secondary to cancer.
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