We’re really thrilled to share this very special blog post written by Living Life to the Fullest Co-Researcher Sally Whitney. In this post, Sally shares the meaning of birthdays and getting older as a young woman who has had complex, chronic diseases since adolescence. 

Getting older

I have always loved birthdays. Since I was a small child I remember counting down the months and days until my next birthday. I would always, and still do, have elaborate festivities and parties to celebrate the occasion. I also try and stretch out the celebrations for as long as possible and it’s not a birthday unless I am wearing a badge declaring it loudly and proudly.

As I have got older I have noticed my peers and relatives becoming less and less excited about their own birthdays and bemoaning getting older. I was aware that my parents weren’t super keen to reach major milestones such as turning fifty and I’m pretty sure that if I had been asked as a child when you are officially ‘old’, I would have said 50 was an old aged pensioner.

Negativity towards Ageing

However, I have increasingly noticed negative attitudes towards getting old and ageing. My friends seem to have been complaining about birthdays since we all turned 21 – that was 10 years ago! 21 is supposed to be a momentous age, a day to be remembered always. I did have a big celebration but I remember the awkward smiles and pitying looks: I had recently escaped hospital after a nearly 8 month stay and had been lucky to escape with my life. I was also skeletally thin, with a BMI of 11, and coming to grips with a new diagnosis with a dizzying array of symptoms and medications. I was still in the midst of shrugging off a damning misdiagnosis and struggling to work out who I was and where I fit into this new world I had re-entered. I had to learn everything from scratch. From eating dinner at a table and using cutlery to ordering coffee at a café. So my 21st to me was an accomplishment of freeing myself of the chains of hospitalisation (thus a reason to celebrate) but to everyone else it seemed like I was desperately hanging on to the very precipice of life.

I have celebrated each consequent birthday with jubilation and pride. I have wondered why my own perspective is so radically different from the attitude of my peers and society in general.

Youth celebrated

On the whole, youth and all that comes with it is held in high esteem. Products are sold to make us feel or look younger. The concept of drinking from the fountain of youth capture society’s inclination to want to stay young, fresh-faced and nubile. The dread that is conjured up by facing the next big birthday seems to be an accepted and almost automatic feeling. However, I really don’t feel this. For me living one year more is a feat to be celebrated. I am beyond proud when I reach another year older. I am proud of both my body and mind for remaining strong enough to have aged another year.

Effects on body, body functioning less well

Perhaps the fixation on youth and negative attitude toward ageing is partly due to the effects on the body that growing older incurs. As we age the somewhat inevitable wrinkles, “saggyness” and weight changes are fought against fiercely. The changes to the body reflect our age more clearly than the age we might feel in our minds. But perhaps it’s more than the an aversion to wrinkles that causes us to protest the ageing process? Perhaps it’s the more subtle understanding that our bodies are going to start functioning less well? In an able-bodied woman a small loss of bladder control, for example, may be a source of great shame and concern. However, I have experienced the failure of various organs and organ systems since the age of 17. I no longer expect my body to function flawlessly. At several stages during my illness I have felt very much like an old lady – I have the bone density of a great-grand mother for example. However, despite needing the level of medical treatment and care of someone a lot older than me, I still rejoice at the dawn of each new year of life. It is the very fact that my body still functions, however poorly, that I am celebrating. It is not how well it is functioning but the fact it is functioning enough to keep me alive. This, to me, is something to be celebrated.

Avoidance of growing up and occasions to “adult”

There also seems to be a trend in our culture towards the rejection of being an “adult”. We have coined terms such as “adulting” and actively seek ways to avoid feeling like an adult. Perhaps it is the idea of giving up the fun party times that a non-adult enjoys or the amount of responsibility that being an adult entails that had caused us to shy away from taking on an adult status. I have to admit that, despite my 31 years of age, I still feel very much like a child in some ways. However, in other ways I feel like I have a soul older than my years. Perhaps this is because I became ill whilst still a teenager. I had just started to enjoy partying and going out when I was stopped in my tracks by a rapid decline in health. Skip forward 13 years and I have only been ‘out partying’ a couple of times. I have missed my responsibility-free years and opportunity to be reckless. Parts of me crave the opportunity to go back and reclaim those years but other parts of me have had to grow up quickly. I recognise the implications of reckless behaviour as every aspect of my life needs careful planning in order to reduce serious health consequences.

Care and independence

The very nature of needing to be ‘cared for’ also blurs the boundaries of childhood and adulthood. In some ways, I still haven’t had to grow up as I haven’t had the opportunity to take on simple grown up things like cooking for myself or the more significant aspects of ageing like getting a job.

It is also interesting to note the cultural differences around the world with regard to attitude towards ageing. In some countries, growing old is something to be revered and the elders in society are held in great respect. In fact, they are considered to be the heads of both families and society. Whereas in the current climate that I live, it is the youthful celebrities who are revered – the shinier and more youthful the better! As I have lived through the different experiences that life has thrown at me, I have matured. I have grown through life lessons and I recognise that I would not be the person I am today if I had not persevered and used the challenges to develop my character. Every birthday I jokingly ask, “do I seem wiser today?”. However, culturally, it seems that the substance of wisdom is not as valued as the froth and frill of youth.

Age-based milestones

There is also a conception that as we age we need to attain certain milestones at certain ages. These expectations are sewn into the fabric of our society. There is an expectation that after education we will go on to follow a career, rent a home, find a partner, buy a house and get married and have a baby. I think one of the reasons people shy away from the joy of growing older is that they feel under pressure to not only reach these milestones but within a certain timeframe. For me, these milestones have become somewhat meaningless. I have reached a place where I no longer measure my life by these pre-determined chapters. I was never able to complete university and required 24 hour care before I could ever graduate. My ill health has meant that for a long time my full-time job turned into trying to stay alive. I felt resigned to the fact that I would never accomplish any of these milestones at all and it seemed as if society was determined to prevent me from doing so.

At one point I looked into buying a flat with a substantial deposit I had accrued. I researched the market only to find that there was only one mortgage provider (specialising in clients with long-term illness) willing to lend to someone who lived on health benefits without a career. This provider would not lend to me however as I had student loan debts from my time spent at university. The only way they were willing to lend to me was if I paid these off, which I would have had to do using the sum of money I had saved, leaving me in a position where I no longer had a deposit. This was heart breaking as I felt that I was being deprived the opportunity to be a homeowner because I had chosen to undertake further education.

However, even the failure to meet expected milestones has not rid me of the joy of celebrating living another year longer. My life is measured by different milestones. The point of reaching diagnosis, of getting appropriate care in place and more significantly accepting my disability and what it means. Each birthday is a celebration of another year where I have fought to be heard. Fought to be provided the correct treatment. Fought to keep my body ticking over into a new year. Ultimately it is a celebration of still being alive.

This is cause for celebration indeed. Since I don’t know what the future holds health wise, I have to live my life in the present and value each moment. This could be said for any person as no one knows what is around the next corner. Someone may have their life planned out and may not feel like celebrating becoming a year older if they haven’t followed their plan to the pre-decided timescale, yet they too live in the face of uncertainty. Perhaps this uncertainty isn’t as apparent but it is still true. This may be a point of learning for those living healthy ‘normal’ lives; that the present moment is the only reality we have and it needs to be cherished.

My grandfather and I decided in my twenties that if I had not graduated from university by the time I was thirty then we would have another form of graduation ceremony. A ceremony where we celebrated that I had navigated the hurdles and weathered the storms of remaining alive despite life-threatening conditions. His acknowledgement of the fact that I was still maturing as an individual in the face of adversity was just as significant, if not more, as graduating from university and following a career. I felt that he understood my need to celebrate my own vitality. In the end, the year I turned 30 was the same year as I got engaged and got married and moved in with my husband. Our wedding became a celebration of not only the joining of two individuals, but a real festival of being alive, rejoicing in the moment and acknowledging the hard road we had travelled. While my heart is still beating, I will keep on celebrating being another year older. I will strive to view every wrinkle as a roadmap of my life and welcome each year with thankfulness. And yes, I will continue to keep wearing a Birthday badge.

Sally Whitney, Living Life to the Fullest Co-Researcher