I am a single parent with what is for me an invisible illness but not for many sufferers. I have a connective tissue disorder called Ehlers-Danlos Syndrome, EDS. It means the collagen my body makes is faulty, so my joints are really bendy and it affects my organs in varying degrees. My daughter, who has it too, also has anaphylactic allergies and significant asthma. I also have attention deficit hyperactivity disorder, ADHD, which is a common comorbidity with EDS.
Since we are in the middle of a pandemic, I should add that I have had long Covid since January 2020.
EDS is a multi-systemic disorder of which there are many subtypes. Most are diagnosed genetically, but there are no markers yet for the subtype I have. It was flagged when I lived in the UK in 2012. When I moved back to Ireland in 2013, I set about the laborious task of trying to find an assessment. There were no EDS specialists in the country at the time, and almost a decade later, there still are none. This is disastrous for families like mine, since usually more than one member is affected, and EDS presents completely differently in everybody. There is no one overseeing our care, which needs a multidisciplinary approach. A GP is the first port of call, but it is outside their wheelhouse, so to speak. In order to access medical and physical therapies in the Irish healthcare system, we generally have to be referred individually for each body or brain part and explain the disorder from scratch each time. Although awareness has increased, this whole lengthy process could easily be avoided. The resultant drain on everyone’s time and money could be avoided by multi-systemic overviews, saving families time on travel to and from a plethora of appointments and risking being considered a hypochondriac for having a systemic illness.
I have travelled to the UK for treatment by EDS specialists in the hypermobility clinic in London. I had no choice, as I wanted to put a treatment plan in place to get back working. I work as an actor, which can be quite physical. There were no options here, which is contrary to the UNCRPD. The HSE does not cover these trips under the treatment abroad scheme. Many of us have Chiari malformation in varying degrees, which can be quite dangerous. For us, it is diagnosed with an upright MRI scanner, and we do not have this service in Ireland either. A scan in the UK can cost £2,000, excluding travel and accommodation and, again, this is not covered by the HSE treatment abroad scheme.
This wastes lots of time and resources for us and the health service. Many of us have had to go private to be assessed, where possible, treated, and for maintenance of the many anomalous chronic EDS issues. This is costly. Other hidden costs involve buying support garments and modifying our cars to make them easier to drive. For example, I drive an automatic car now. Some people need more extreme modification. Costs for heat pads and regular physiotherapy all mount up. Without regular physiotherapy, I would not be mobile. I do it so I can work and parent. I have had access to amazing physiotherapy through the HSE for a few years, and then a physiotherapist came to my area who had no interest in EDS and no interest in helping me, so I ended up going private. It costs me thousands every year to do private physiotherapy, without which I would not be able to walk or work with ease, and I am one of the extremely lucky ones. I am paying through the nose so I can participate in society, but I should not have to.
The mobility grant, which was to aid people with walking difficulties, was stopped to new applicants in 2013. A new scheme was due to replace it but, as far as I am aware, nothing has transpired. The mobility certificate is available to those who are significantly impaired, but for many of us who are chronic sufferers, we fall between the cracks. We are not considered disabled enough, and therein lies most of the indignity of the application process. The refusals for domiciliary care allowance, DCA, and disability allowance are such a common thing that people in support groups are advised to apply over and over. I have never applied for it. I find the social welfare system hostile and intrusive at best, and I do not have the stamina for the overly complicated application process.
I am lucky to have a medical card on medical grounds, but I have no idea how I would afford EpiPens for my daughter, inhalers for both of us, medication and the many doctor appointments we have throughout the year without it. The renewal process for the medical card is stressful and humiliating. By the time your card is granted, you are panicking about having to reapply for the year following. I must pay for letters from my GP to reapply and prove how needy we are, despite the reality that our circumstances are not likely to change from year to year.
Disability payments are means tested, meaning many people with EDS would lose all their family supports should they, for example, meet a new partner who is expected to shoulder the burden of a family's medical costs. Further, should they want to be fulfilled and try to work as much as they can, they may lose access to supports like their medical card and other health services. This puts people like me in an even more marginalised category, where we are left under a glass ceiling and unable to fulfil our potential. If we work, we have supports removed. If we move in with a partner, we have supports removed.
Most people I know are overwhelmed and not able to work as a result of bureaucracy, or are supporting families on low income rather than being able to do the jobs they previously enjoyed, even on a part-time basis. There are no strategies to keep people in work because the support system is not tiered; it is all or nothing. Rather than this binary view of our health and welfare system, we should be creating an environment where it is beneficial to all of us, and society as a whole, whereby people feel they can achieve their potential. If we do not feel useful, we are not fulfilled, and we have every right to feel useful.
Anxiety, depression and neurodivergence are common issues with EDS, but again, there are no supports for this in the public health service. There is no public adult attention deficit hyperactivity disorder, ADHD, assessment pathway in Ireland, despite the HSE website saying the contrary and making public reports about it year in, year out. The website for ADHD for adults looks like an advertorial. There is no route progression that you can access and have a look at. It took me more than 20 years and hundreds of euro to access an assessment. My education experience was significantly affected by ADHD. I dropped out of university and I struggled with disorganisation for years. I now work as an actor and it affects how I learn dialogue. I had to pay privately for these services for two decades on a low income because the provision is not there. I am now able to access my local HSE mental health team, but they are so understaffed that I have had appointments cancelled due to no doctors being available. The health system is creaking at the seams. It seems almost unrealistic of me to expect improvement to disability services when there is a sparse and burned out staff. We are at the bottom and we are suffering because of the inadequate structures. My daughter has significant asthma. We have seen her consultant once since 2019 and she will not be seen again until mid-2022, despite a few accident and emergency trips in the last 12 months.
I have long Covid since January 2020, which has caused significant problems throughout the year with breathing, driving, walking, cooking, dressing, my voice and the school run. I estimate it has cost me a few thousand euro this year alone in consultant fees and diagnostic tests in the private sector, despite attending one public hospital long Covid clinics as well, which was seriously busy. Without those private appointments, my recovery would not be as advanced as it is now. However, I had to pay for it and I could ill afford it. I am one of the lucky ones. There are no long Covid facilities for children in this country. There are no statistics being kept on long Covid sufferers in Ireland. Why not? If you do not count us, we do not exist. It is a disaster that is happening now.
That brings me to the end of my piece. As someone said to me yesterday, it is not our issues that are expensive, it is inequality itself that is so costly to society as a whole.
