There is a time before the diagnosis and a time after. Sometimes it will have taken months or years of searching, trial and error, and uncertainty to get there. Although it is not always easy to accept it, receiving a diagnosis is a pivotal moment in the relationship and the journey with the disease.
The (long) wait for a diagnosis
It only took six months to find out what I had. Not much time in fact, if you look at the testimonies that litter the forums dedicated to certain chronic diseases. People for whom it took several years to finally find out what they had, to put a name to the symptoms that were undermining them, so that they could be treated. Because, in the first place, having a diagnosis means that you can finally be treated – not cured most of the time, since a chronic disease is often incurable – but treated so that you can finally start to get a little better.
But having a diagnosis is more than that: It’s putting a name to this unknown disease that has been ravaging us all this time, without us understanding what was going on. In the first months of my illness, I could only see that my physical condition was not what it should be, that it was only getting worse and worse. It was quite distressing, actually. Not knowing is undermining. Knowing can bring a form of relief, even if it is sometimes only short-lived depending on the diagnosis. But at least you know what you’re up against and what you’ll have to deal with.
The diagnosis: Relief…or not?
The fact remains that the diagnosis is more or less a relief. I’m not sure I would have been as relieved to be told what I had if I had been told I had a degenerative disease and only had a few years left to live. Knowing that I had an incurable disease, but that it could be stabilised came as a relief after several months of seemingly endless physical deterioration.
Finally having a name, a precise diagnosis, allowed me to start planning again. It meant knowing where I was going, with what implications and consequences for my daily life. I had been promised that the disease would stabilise with treatment. It took a while, but it did work in the end, even if stable doesn’t mean symptom-free.
So, of course, when you are diagnosed with an incurable disease, you may ask yourself: Why me? Why not others? Why is it my life that is rotten with the disease? In my case, it really got better when I started the treatment adapted to the disease, which is why I didn’t ask myself for too long “Why me?” This is where the prognosis with the disease probably plays a big part. Knowing that I would not die from it made my relationship with the disease and my acceptance of the diagnosis easier.
After the diagnosis: New perspectives?
I am not talking about acceptance in the sense of resignation. Resignation is acceptance, coupled with being overwhelmed by the disease. One suffers. On the contrary, acceptance is chosen. It is not always easy, but it gives the means to continue to move forward. It allows you to accept reality as it is, while continuing to project yourself, to make plans, to envisage a future. But it also allows a more peaceful relationship with the disease, which then becomes more of a companion than an adversary. Seeing my illness in this way has been a long, difficult, but fruitful journey. However, the diagnosis is a first step in this journey and this acceptance of the disease. Without a diagnosis, it is not possible to project oneself, since one cannot see anything. The symptoms are a fog that constantly occupies our mind and paralyses us.
The diagnosis gives us a new lease of life. It’s so much easier to move forward with something you know. Without answering the “why” – but no one can – it answers the “how”: How will I move forward? How will I live with this disease? It is then up to each person to answer the “what for”: What for am I going to live with this disease? What will I get out of it that is positive for me and for others?
And then, on the days when we lose a little patience, we can tell ourselves that medicine is constantly making progress and that perhaps one day, we will be cured. Even if this is not always enough.