From Cape Town to Hanoi: Let it Go. Let it....Read More
Part 2 of my latest blog. Thank you for reading this part of my blog as well. Please feel free to share under your healthy and chronically ill friends.
Someone sent me a quote the other day, it said “the books you read now will determine where you are in 5 years”. People (mostly the healthy ones!) often get asked where they see themselves in 5 years time, what is their 5 year plan? This made me think.
Can we as chronically ill patients have goals and if so, what are they? Is it still possible to have a vision for the future?
https://consciousmagazine.co/why-having-a-vision-is-the-most-important-aspect-of-your-life/ writes having a vision is the most important aspect of our lives…below follows an extract from this article.
“What exactly is vision? The dictionary defines vision as an act or power of anticipating which will or may come to be. Vision gives direction and a glimpse over our life to make our goals and purpose become a reality. In order to understand where we want ourselves to be in life, we must have a clear vision over our life. So, once you understand that vision clarifies purpose, life will become simpler and more meaningful. It’s so important to have vision and purpose because; it actually controls and makes our decisions, which ultimately creates our lifestyle. I will highlight and break down three ways how vision directs us to our purpose.
- Vision chooses our friends
- Vision decides how we spend our time
- Vision creates our habits”
The above is miles away from the reality of living with serious chronic illnesses such as ME, Fibromyalgia, POTS, Chronic severe pain, Mast Cell Activation Syndrome, Long Covid, Advanced Cancer, Arthritis, Multiple Chemical Sensitivities, etc.
Most days our goals are just to survive the day, sometimes even an hour at a time.
In all the years of having ME myself (this month it will be 20 years since the gradual onset of it) I have never come across a ME (or those with ME and/or the co-morbidities mentioned) patient who didn’t want to get better. For us the slightest improvement (and it is usually short lived) gives us renewed hope, makes us think a better future is possible, thus having a future vision even if it is only for a few minutes/hours at a time.
There seems to be a perception that when your illness becomes chronic you should be used to it. I am sorry, it is just not true! When someone has acute toothache they most definitely think about it most of the time, they can’t wait to see a dentist to get rid of the horrible pain. However, when your severe pain becomes chronic it is almost expected that you keep it to yourself.
So can we have a vision as per this article? And as per the article vision directs us to our purpose:
It is incredibly important to understand that these illnesses have different levels of severity. Some patients literally live with death constantly peeking over their shoulders. So their vision and goals are to survive the day, to not surrender to feelings of utter despair and fear.
Even if you are mild or moderate chronically ill your life revolves around your body. It can act out any moment, you can have a ME flare without any warning, it can be mild or very severe, it can be life threatening, all the other illnesses mentioned can do the same. The hallmark symptom of ME is Post Exertion Malaise (PEM) where even the slightest over exertion (physical, mental or emotional) can cause a massive ME crash which can lasts days or even longer and there’s always the risk of getting worse…..
With cancer you are on a roller coaster ride of cancer markers, is the cancer reacting to the chemo or not? It often varies from treatment to treatment. I have had many times over the past two years where I thought this is it, I am going to die soon and then suddenly the cancer responds positively to the chemo and you have hope for the future again! I was really sick the beginning of December 2021 and again over new year’s. Going to bed made me wonder would I wake up the next morning, then I did and after a few days I started feeling better, thinking here we go again, there is hope, there could be a future after all. Living with death lurking over your shoulder changes your life and it changes you, for better and for worse.
Being chronically ill often means your healthy friends disappear, it is just the way it is. With all its faults and shortcomings social media has become a life saver for many chronically ill patients. Prior to Facebook, Twitter, Instagram and also WhatsApp, patients were not only isolated in their rooms/houses but also had very little contact with the outside world, let alone with people with the same debilitating illnesses. New friendships form, often without meeting in person. I have met the most incredible people over the past decade. Kind, strong willed, incredibly talented and yet some unbelievably ill.
So yes, our pool of friends have changed, Again I have to stress the fact that there are people who are so unbelievably ill they dare not communicate with others, not even on Facebook, they will pay a very high price and become even more ill. This breaks my heart. I have witnessed ME patients over the years who have gone from fairly functional to completely bedridden, having severe non-epileptic seizures, are so sound, touch and light sensitive they can’t tolerate any form of communication. Imagine such a life! It’s torture to say the least.
Does living with a serious chronic illness give you the choice of how you spend your time? It primarily depends on how severe and debilitating the illness is. Some of us have that luxury, many just don’t.
Ignorant people will advise the chronically ill to stay busy, just be positive, but there is a level of illness where you cannot function, just going to the bathroom can set you back for days/months. Yes, we can keep our minds busy and believe me we do. It is incredibly difficult to not become your illnesses as the symptoms are often so severe a healthy person would experience it as unbearable. We fight this with all we have, to still be more than our illnesses, to see our illnesses as “only” a part of us.
In one of my previous blogs I covered the issue of toxic positivity.
As said my ME started gradually 20 years ago and I can’t recall family members or “friends” told me how strong I was, what a fighter I was. The few exceptions know who they are. Many negative comments were made, in front of me and mostly behind my back. Nobody had any idea what the cost to my body was to show up for social events. I remember I was feeling so sick at a birthday party I couldn’t even pretend I was okay. I heard later on I was depressed and didn’t like my in laws…. The advice was to keep busy, to not focus on my illness. No we don’t focus on our illnesses, it is just so debilitating it consumes us at times. Not because we choose too or are weak or negative! Remember the toothache example. Imagine you have multiple teeth throbbing with pain, you can’t eat, you can’t even talk from the pain, let alone sleep. What will you do if someone tells you to stay busy, to be positive…..? However, as often mentioned once I was diagnosed with cancer, everything changed. I am being told how strong I am, what a fighter I am.
Obviously I appreciate the love and support I have received since being diagnosed with cancer, however, it makes me so angry that the same doesn’t happen with less visible illnesses. I was saying to family over new year that cancer is horrible but ME is worse. I am not referring to the end of life stage from cancer, although patients with very severe ME are probably just as sick or even worse than those with terminal cancer. One CAN die from ME, it has happened this week again to an overseas ME advocate.
People living with debilitating chronically illnesses have learned a new habit (a new skill), we are actors of note. Most of the time we hide how incredibly ill we feel, how the exhaustion is such that just lifting your hand is a major challenge or we hide how consuming the pain is. We sit or lie there pretending we are okay. We want to protect others from the ugly truth….Why do we form these habits? I think we start pretending for more than one reason:
So to answer the question whether we as chronically ill people can have a vision for the future, in other words whether we can clarify our purpose? As said above it is believed that vision and purpose actually control and make our decisions, which then create our lifestyle.
I wonder if it doesn’t actually work the other way around for us.
Our health determines to a large extent our friends.
How we spend our time is often if not always depending on our health at a specific time.
New habits are formed determined by what our bodies are able to do.
Hence the above determines our vision of the future. The toxic positivity school of thought might disagree completely, ideas such as mind over matter and if you are mentally strong enough your health will improve are often mentioned. I am sorry, but after being chronically ill for 20 years and being an advocate for ME and other co-morbid illnesses for almost 8 years, gives me the “authority” to know how things work in real life.
I am not saying we are victims or negative people at all, in fact being chronically ill requires the person to be exceptionally strong in many ways. I am contemplating that having a vision for the future follows from what our health allows/can handle.
However, herein still lies a wonderful opportunity for us, to try and make a difference in this world despite our serious limitations and from this a vision and a purpose can follow. We can still make a difference in the lives of others, even if it is just one person. We start changing the world in our own small circle of life.
Our perception of the timeframe for our future vision is most likely much shorter than that of healthy people, off course anything can happen to healthy people, but when they set their goals they are quite certain it is possible to achieve. They can visualise their vision. We are not sure what way our health will go.
Part of having a vision includes setting goal, so what goals can we as chronically ill people have?
Lastly, I have to mention the importance of money and access to appropriate health care. When you are healthy and hard working chances are that you will be able to put some food on the table, it might not be your dream job but you can most likely earn an income. You can set goals and live with a vision for your future. I am not ignoring the fact that unemployment is a real problem, but for the purpose of this blog I am not focusing on it.
However, when you have become disabled for work and your funds dry up what do you do? In some countries you can get benefits from government, however, in South Africa chances are extremely slim and if you are one of the lucky ones the grant is very small, totally insufficient. Thus goals and having a vision for the future are unfortunately impacted by your bank balance or the complete lack thereof.
My plea to you as a healthy person is to not assume, to not judge! We don’t pretend we are ill, we pretend we are okay and that is a full time job! We won’t bore you with details of how awful we actually feel, just know that showing up at an event is a massive sacrifice but also an act of love for you, our loved ones and friends. We still want to be part of your life, we want to be there on all your big days!
Much love, till next time.
On the side:
1.) I was extremely fortunate meeting the amazing Prof Resia Pretorius at an event in Cape Town for invisible disabilities early December 2021, she and her team give us hope! Her wonderful PhD student Massimo Nunes is so passionate to help ME patients, it is heart warming. I had the T-shirts made through Nathalie Williams from Dragonflies and dreams. My husband Boet has been incredibly supporting, not only for me personally, but also fellow ME patients and my “baby” The ME CFS Foundation South Africa. Professor Resia and her team are busy with a ME study in South Africa!
2.) I was interviewed by our national TV investigative journalism Carte Blanche program during February 2021, together with prominent people from Open Medicine Foundation. The story aired during September and we have just received the YouTube link…… It is about Long Covid and ME, herewith the link….