Twelve years that my life has changed dramatically, for the worse, but also for the better. Twelve years of chronic disease, with ups and downs, with more or less (but almost never no) symptoms. I certainly would not have chosen to be in this situation, if I had been given the choice. But, twelve years later, I can see how much I have gained from this illness: humour; gratitude for the things I receive and the people around me; patience, even if it is still a challenge at times; more attention to others and to myself.
1. Positivity does not prevent you from being angry
I’m not talking about the somewhat toxic and unrelenting positivity that I had during the first years of the disease. This logic of “everything is fine” at all costs without taking the time to ask myself if it was really true. This idea that you had to hold on at all costs, that it could always be worse. Yes, it could always be worse. But you can also legitimately hope that it will get better, especially when you’re on your tenth hospitalization. For several years, I had a hard time accepting that I was angry about being sick, not that it was unfair, but just that I was angry. And then I learned that it doesn’t work to be positive all the time. Indeed, there is nothing positive about needing a wheelchair or having forced days off. It’s inhumane to impose this toxic positivity on yourself. And it doesn’t make any sense because being absolutely positive only delays a confrontation with the reality of the disease, which is not always easy. Once I accepted that being angry was human and possible, seeing the positive sides of my disease was easier.
2. Humour saves the day
We all know the saying: “It’s better to laugh than to cry about it.” And even though there are times when the moral or physical pain is too great and the tears flow regardless, I have often realised that this is very true. With a chronic disease and a wheelchair, you often laugh at the absurd: a disabled toilet signaled at the top of a flight of stairs; someone explaining that they don’t want to go near you for fear that you might infect them as if you were plague-stricken; a wheelchair wheel bursting… I have often had the impression that when faced with these absurd situations, you either cry or laugh, but that on the whole, laughing at them at least allows you to laugh very often. Which is always a win-win situation!
3. You are alone, but fortunately not really
This is one of the paradoxes of a chronic disease: even if you are very well surrounded, you are still alone in feeling the symptoms, the pain, the fatigue. And it was hard, especially at the beginning when I had the illusion that being surrounded would be enough to make the disease easier. To this was added a certain disappointment, that of seeing what I thought to be friends disappear from my life. As time went by, I realised that those who had stayed or arrived in my life were those I could count on against all odds and who, by their presence, made the disease easier, especially in its most difficult moments. The beauty of the relationships I have built since becoming chronically ill is that they are truer and deeper. Also, although my faith in God has had its ups and downs during the course of the disease, it has been a great help, a certainty that I was not alone after all.
4. The little things in everyday life are precious
In the early days of my chronic disease, I was so weakened that some everyday activities became almost or completely impossible. Emptying the dishwasher, cooking or just walking for more than a few minutes became impossible. I was really pleased – I know it sounds hard to imagine – when I was able to empty a dishwasher again. Of course, because it meant that I was well enough to do it. But also, because by being deprived of these seemingly banal everyday actions, they developed a very special meaning. It was as if they took on a different value because I no longer took them for granted. Even if they are not comparable to the weak days at the beginning, the days with more symptoms that I still experience from time to time always remind me of the value of these daily actions and to enjoy them when I can do them.
5. Patience is a must
That patience was a difficult subject at the beginning of my disease, but how unavoidable. I soon learned how much patience was needed to be sick: Because I was tired and dependent. Because I always had to explain what I needed. Because I wanted to feel better. Patience is a virtue that has been lost, as I learned the hard way, when I naively thought I was patient. Not being able to change circumstances or control them requires a lot of the patience that allows acceptance of the situation as it is. It is also the realisation – sometimes a bit brutal – that not everything happens as we had imagined or wished. But with humour and flexibility, we can decide to let ourselves be surprised and accept things as they come. In this way, we can accept the situation as it really is, not as it should be, which avoids a lot of frustration.
6. Taking care of yourself and paying attention to your needs is important
Learning to listen to myself, to take breaks, to recognise my needs was another lesson of the disease. A lesson in caring for myself to learn to say stop and take a break when necessary. I am still learning to do these breaks before they are forced upon me by my state of fatigue. I recognise that this is difficult because it goes against my natural tendency to always do more. But with time, I have come to accept that having difficult phases, where I have to pay more attention to myself, is not a sign of weakness, but on the contrary, a proof of strength, that of knowing how to resist this impulse to “do more and more”. So, when I feel the fatigue building up – ideally, before I’m completely wasted – I give myself a break with a good book or a nice film with a hot cup of tea. Finally, taking care of myself also means taking care of others. Indeed, if I’m rested, I’ll be more available to help others, but also because if I don’t listen to myself, I’ll potentially need more help and it’s the others who will suffer because they’ll have to take care of me and help me. So, looking after myself is doubly beneficial.
Of course, I have learned other things in twelve years of illness – prioritising better, not letting myself be stepped on, well, wheeled on, etc. But these six learnings were the most striking, the most transforming too. For some of them, I was already aware of them before my chronic disease. But my chronic disease made me experience them more profundly, which made them more striking.