#26-HOW LONG
How long?
Hey everyone!
I have been fighting to get out of pericarditis for 4 years now. I woke up in a morning of March 2018 with a feeling that my heart was on fire in my chest. When you experience this kind of pain, you know deep down that something is wrong, that it is serious this time.
The heart races and the pain make the most stoic of us wince. It feels like a heart attack and it's been going on for 4 years. If hell has a nickname, it has to be this one: pericarditis.
Doctors say they don't understand much about it, and for some, they don't really look.
It is true that on paper, a "classic" pericarditis lasts between 3 weeks and 3 months. Beyond 3 months, it becomes exceptional. A rare disease. A chronic illness.
The diagnostic method is unreliable. If an ultrasound and an electrocardiogram give no results, this does not mean that there is no pericarditis. It is a vastly underdiagnosed disease.
When it mixes, as in my case, with other symptoms linked to a post-viral illness, in other words, the complexity puts off more than one.
Chronic illness often means: insufficient financial means and/or will to advance medical research and find an effective treatment for a disease that is not so rare and not so invisible as that.
A doctor told a patient with long covid that if he was not cured after a year, he would never recover!
What evidence do doctors have for saying such nonsense?
Given the pain felt by their patients, is it a question of pushing them to despair? Do some doctors think they are gravediggers?
Is there no medical research? Is there no hope for medical advances and effective treatment?
I am not a diviner, but for me, it is always a form of medical gaslighting to hear doctors throwing such assumptions.
It's been a long time since I listened to this kind of doctors, who cover up their ignorance with a double dose of arrogance, or at least with a lot of reserve.
Following surgery, I had phlebitis on the arm where the baxter had been placed. It lasted for months. My hand was blue and the veins swollen. A young doctor told me that my hand would stay like this for life. It took several months to treat the phlebitis, and dozens of bites. My hand and arm are back to normal. Neither seen nor known! So the assumptions and the cookie-cutter phrases of the doctors, for me, it is always with a smile and a “Yes, of course! ".
At the beginning of my pericarditis, I sought information from people who had suffered from it. And someone quickly informed me of a man who had had pericarditis in the 1990s! We thought he wouldn't make it, I was told.
I bumped into him one day in a supermarket aisle, and I approached him to tell him about my condition and ask him if he had a message for me, something I needed to know. Among other things, he told me that he had suffered from pericarditis for 7 and a half years. From 46 to 53 years old approximately. And he is 75 today. That was over 20 years ago, and he's still alive. He no longer has pericarditis. His message was this: “It’s very hard. But hang on! If I got away with it, you can do it too! I thought I was going to die, but I got there. Don't lose heart, you will get well too! »
These words come to my mind very often, in moments of pain, discouragement or loneliness. It took him 7 and a half years, I have no right to give up. I too can get away with it. I will heal.
To trust our body, but also the providence to lead our steps towards the good doctor who will be genuinely interested in our case and will get us out of there. Over time, the body repairs itself. I am a fighter and I will recover. And if it takes me 7 and a half years, or even 5 years like this other person I also know, well I'll cling to life, I'll bite on my quid until I get up proudly!
The question underlying this article is how to self-regulate in times of prolonged uncertainty.
With pericarditis, we can feel uncertain, we don’t know when this disease will end. So, how do we copewith doubt?
I could tell you:
1/ Identify and acknowledge your feelings of uncertainty.
2/ Write down what worries you or talk to someone of confidence, call a friend.
3/ Take action (daily routine, yoga, meditation).
4/ Repeat a mantra of encouragement (I can do it, I will do it).
5/ Give yourself a “high-five” in the mirror at least once a day (read the book “High 5 Habit” by Mel Robbins).
Every story is different. And everyone reacts with their own abilities.
The truth is that the fourth answer is the most helpful to me. Telling myself that everything will be fine, that I will get there.
Keeping hope alive is an act of self-love.
And what founds my hope of recovery and the certainty that I will get out of it, is knowing that others have done it before me.
I don’t know who needs to hear this story but I hope that it gives you courage and strength to fight if you have pericarditis. In my case, the example of this man, who fought to recover from his pericarditis for 7 and a half years, gives me the courage to fight every day.
How long? I do not know.
NEVER LOSE HOPE!
Pericordially yours,
Vali