Probably one of the hardest conversations to have when you become very ill and disabled are those around money and finances.
When people first become sick and ill often their first thoughts will go to their jobs, careers, incomes and security. These are very important to being able to maintain and sustain our lives. It is vital that we try and support ourselves and it is often for these reasons that we feel the most vulnerable and alone.
I was extremely worried what would become of my health and my relationship when I first become very ill as I was the primary income earner. It was a truly terrifying prospect and my husband and I did our best to show courage and take things one step at a time.
It was quite surprising to me that when I spoke with friends and family back then their prime concern was for my financial situation more than my health prospects. I recall that it was both strange and sad to as I look back. I felt that my health and how I was feeling emotionally about all that was happening to me was far less important than how I was going to earn money or support myself.
Some people even started suggesting ideas of ways that I might be able to work from home and do some things from bed, this was even before they knew what limitations or symptoms I was experiencing. It was clear to me how society rated my worth and value.
As the months wore on some people asked me when I would be returning to work and what my plans were to earn a living. Sometimes someone would suggest welfare payments and how then caution me how difficult it would be to access such benefits. I recall that I began avoiding even speaking to people as it became extremely predictable what they would say despite the fact that they should have been aware of how painful and stressful these topics were.
Another interesting point during these times was that despite financial concerns being the prime topic of conversation to those who seemingly closest to me, not one offer of support or assistance was ever offered. Ever.
It was almost like people dreaded the idea that I could or would become dependent on their financial support despite the fact that I, myself, had given aid and assistance to many people during the course of my life.
All of these things made my husband and I even more determined to never seek help from anyone and never to discuss money to another living soul. We would do whatever we had to, sell whatever we had to and go through anything necessary to make a life on our own.
And to this day we have done just that!
Oddly enough that after several years of coping by ourselves, that a common remark from people was “how on earth do you manage?”. Their questions seemed far from that of genuine concern or admiration and were more about wanting to pick up some tips or ideas for themselves. Curiosity more than kindness.
As the years passed we were extremely proud of our own resilience and tenacity and how we had managed to solve many of our own struggles all on our own. Careful planning, budgeting, research and good choices were slowly paying off. We also reminded ourselves that if anything should ever change or tip the scales we would always be prepared to sell everything and live as meagerly as we had to. No exceptions.
It obviously was beneficial to our circumstances that neither of us drank or smoked. We rarely went anywhere. We didn’t eat out. We never went on holiday.
When you are facing the daily battles of moving, breathing, eating and basic functions like this it becomes no real sacrifice to forgo luxury homes, modern fashions and expensive holidays. It was surprisingly easier to imagine any adjustment that might be necessary as we became increasingly grateful for any and all the small things in our life. It was as though only the healthier and able bodied people were the ones who were more obsessed with such things and are always wanting more and more.
As an ill person I found I craved simplicity and minimalness. Achievements and validation became a deeply personal thing and whatever we did or whatever we succeeded in was now kept solely between us. We lived outside the understanding or comprehension of most human beings and it became easier and easier to adjust.
Although over the last decade we could never have anticipated the number of people who would come to us for assistance and accept our charity and support despite knowing our personal circumstances and health status! It was truly amazing.
Those that were disparaging and suspicious of us financially were now sharing their tales of woe and gladly taking the help that I felt compelled to offer as an empathic and caring person. Even those that had suggested to my husband to abandon me due to my health and perceived reliance on him were taking money, gifts, help and support from us; me in particular.
Through careful planning, some risk taking, restructuring and research we have managed to keep afloat and have never sought help from anyone. Especially anyone supposed to be closer to us. It is one thing that we are acutely proud of and protective of but also makes me incredibly sad that this is how the disabled and chronically ill can be treated.
Over the past decade I have read, seen and heard the way people describe the welfare and support of the sick and disabled. It is deeply disturbing the way we can be demonized and called leeches on the social purse after many of us having given and contributed in our taxes and insurances. Especially when we have done nothing to deserve such judgements.
Every disabled person and autoimmune who has been forced out of their careers and financial security would give anything to return to the work force. Anything. We go through endless pain, medications, suffering and side effects for the chance to have our old lives back and in return we face an epidemic of public scrutiny and name calling.
As more and more money is spent on politicians, arts, entertainment, sports and many other areas it is difficult to understand why human life and disability has been deemed the lowest of concerns and priorities. It seems society always needs to demonize those who are least able to fight back or stand up for themselves. It is sad to see the fate that awaits an aging population at a time when there are more and more incidences of mental health problems and widening social imbalances.
Even over the past decade my husband and I have donated, assisted, supported, bought gifts, funded and helped all those we can based on our caring natures, love and empathy. I have always considered people’s personal circumstances and done my best to give of myself even when I have had so little to give, physically. However there hasn’t been a moment that my husband and I have felt that same support in return or regard for our unique struggles or challenges and we know we never will.
Over the years we have come to realize that, as with all things in life, people never appreciate anything until it happens to them. As such we have weathered the scrutiny, comments, judgements, opinion and suspicions of others whilst taking comfort in the fact that we have always done our best and faced challenges many can never comprehend. These days we often have people coming to us for advice and support despite having never received it ourselves. A bitter irony to accept.
I write all this in the hope that one day this may assist my fellow Autoimmunes and chronic fighters and that we will be shown the consideration and respect we so richly deserve.
Even if it doesn’t happen in my life time, I hope one day people will appreciate and see the true worth and value that chronic lives have and not simply see us as an unnecessary cost or expense.