Tiffany Mazars has suffered from fibromyalgia since adolescence. This chronic illness manifests itself through widespread muscle and joint pain throughout the body, but is not diagnosed by any medical examination. So, how can we accept it and talk about it with those around us? Tiffany gives us 5 tips for living better with this invisible disability.
” Fibromyalgia is a ‘waste disease’. There is no test to detect it and there is no treatment, ” explains Tiffany Mazars, who was diagnosed at the age of 22. Yet it is a condition that affects many people in France: 1.6% of the population according to the French Health Insurance.
What is fibromyalgia?
It is above all a syndrome combining bone and muscle pain as well as stiffness when moving.
Only a clinical examination can be carried out by a treating physician or a pain specialist, after eliminating other diseases such as rheumatoid arthritis.
What are the symptoms?
Symptoms vary from person to person, but chronic pain is the main one. It can be localized, but it progresses over time and can spread throughout the body. This pain is aggravated by exertion, cold, emotions, and lack of sleep.
The most sensitive areas are close to the spine: neck, shoulder, shoulder blades, lower back and hip.
But other symptoms are also described by those affected: sensations of knotted muscles, digestive problems, breathing difficulties, sensory, visual or auditory problems, etc.
In addition to these symptoms, there are short-term memory problems called anterograde amnesia, and difficulties with attention and learning.
All of these symptoms can lead to anxiety, mood disorders, and even depression.
What treatments?
Since the origin of the disease is unknown, there are no drug treatments. Only a personalized approach can be partially effective.
Faced with this disability, Tiffany Mazars fought to exist professionally, even putting herself in danger: exhaustion, burnout… Trials that allowed her to accept her disability and transform this reality in a positive way. Today, she is a speaker and communicator and she gives us 5 tips for living well with your disability and regaining self-confidence.
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Tip #1: Connect with yourself
When we experience difficult times, we seek our place in society, but above all, we must find our own path to gain confidence and accept the situation. Even if the phenomenon remains difficult to understand, this ordeal allowed Tiffany to ” meet herself .”
Tip #2: Accept your disability
It’s necessary to accept the situation as it is and not imagine what it should be, nor think about what we were before. This positioning allows us to free ourselves from guilt, to be ourselves and no longer worry about what others think.
Tip #3: Be pedagogical
In other words: don’t justify yourself, but explain. Others need to understand and accept what we’re going through. In a very factual way, we can explain our needs, our constraints, etc. Even if those around us can’t fully understand our situation, this begins a real understanding.
Tip #4: Dare to talk about it
Dare to talk about it to fight against phrases like: ” it’s in your head “, ” it will pass “. “We must talk about it to no longer feel alone and contribute to helping those who have the same pathology. Share your tips, contribute to a positive and optimistic movement and why not help to have invisible disabilities recognized in the law.
Tip #5: Get help
It’s not easy to do, but you have to team up with yourself. With self-knowledge, you can achieve great things. After a period during which Tiffany needed a wheelchair to get around, she found the strength to climb the legendary Piton de la Fournaise, the volcano on Reunion Island.
