In a phone call with a friend a few weeks ago, when we were discussing my health, I explained to her that my chronic disease has become part of my daily life and routine, and that it does not need much ‘maintenance’ after all. Indeed, I have learned to cope with its ups and downs, the days with fewer symptoms and especially those with more symptoms.
Beyond the beginning
In retrospect, I think it’s safe to say that the first few years were the hardest. In the beginning, there is the onset of symptoms and then the worsening of symptoms. Each new symptom is a surprise, as well as a shock: slow walking, quiet voice, uncooperative fingers, neck pain.
Even after the relief of the diagnosis, the beginning is overwhelming: You don’t understand anything, you can never anticipate, you can’t adjust yet. You suddenly have to deal with all these drugs, treatments and doctors. And it’s not always as effective as you’d hoped or were led to believe… There’s a certain frustration in having to constantly adjust your plans according to how fit you are on that day and how intense the symptoms actually are.
The power of time
Then the years pass. And you learn.
You learn about the disease, what it requires, but also what it allows.
You learn how to organise treatments and medicines and develop systems so that you don’t forget your medicines during the day.
You also learn to explain to others what the disease means and involves in daily life, as one’s own understanding of it increases. As time goes by, others get used to it too.
You learn to say “no” to save your strength for what really matters to you.
You learn that, if there are bad phases, there are also good ones.
You learn what feels good and what doesn’t, or more accurately, what doesn’t fit the disease. You learn how to manage your energy levels to the best of your ability and how much each activity will cost you.
You learn not to panic when you suddenly feel worse again, and then you know that it’s only a matter of days or weeks (hopefully not months) before things are back to normal. At least, to the normal that you are now used to. Which is your norm now. Whatever it is.
You learn to be patient and not to give up. Even when you do not feel well.
You learn to make the most of what is still possible, because in the end you can also do things differently. You also learn to understand better what you need to have a life as close to the one you would have hoped for, the one you would have had if you had not been sick. And finally, you learn to be at peace with the disease.
The disease as a companion
Over time, the chronic disease becomes familiar, and if not a friend, at least a companion whose variations and facets you know.
And sometimes you even forget that you have this disease because it has become quite normal for us. I occasionally forget to tell people that I am sitting in a wheelchair. It’s more or less problematic: the last time it happened, I managed to climb the stairs and make everyone uncomfortable… But nothing insurmountable.
The chronic disease is now part of everyday life, and its treatment is part of everyday activities.
Surprises are rare. They still happen occasionally, otherwise it would be boring. But with time, patterns are recognized, and while the reappearance of a symptom may be unexpected, it is rarely a complete surprise.
Making peace with the disease is not about resigning yourself to it, but about learning to live with it, dealing with the harder times and the easier ones, and enjoying life differently than you might have done before because you have learned how quickly a situation can turn around.