How do you transform your life when your life has been transformed by illness?
We are often faced with challenges in our life. These may include childhood traumas, harsh life conditions, death of loved ones, divorce, work loss or financial difficulties. Facing a medical diagnostic or chronic illness is another life event that is every bit as stressful as those mentioned.
Living with a chronic illness is a challenge many of us face. It forces us to adjust and adapt our life to feel better, to feel safer or to cope with other conditions this disease will bring. For example, a patient diagnosed with Type I Diabetes will have to adjust their meals, monitor blood sugar levels and administer insulin shots. This patient will also need to consider comorbidities or consequences related to their Diabetes like neuropathy, renal dysfunction, cardiovascular risk, etc. Mast Cell Disease is very similar in this regard.
Diagnosis is the first step.
Experiencing symptoms that are not medically explained is a challenge many Mast Cell Disease patients face. Many patients experience months or years of pain and symptoms without diagnosis. Since stress triggers mast cell reactions, many patients are told their symptoms are all “in their head”.
When a diagnosis of Mast Cell Disease is suspected or confirmed, patients may experience shock and sometimes relief. Rare diseases can often take many years to diagnose. By that time, the patient is feeling helpless, fearful, doubtful and stressed without knowing exactly why they feel ill. There is an element of relief that comes with diagnosis because the patient finally knows why they are sick and can turn their attention to managing the disease.
How to cope and adjust?
The spectrum of Mast Cell Disease and its variants are challenging because patients experience different symptoms, are afflicted differently and cope in various ways. For a newly diagnosed patient, it is important to know this process of coping takes time…perhaps even a lifetime.
In my practice, when I meet a client afflicted by a medical or psychological diagnosis, the first thing I say is “If you want to defend yourself, you better know who your enemy is”. Knowledge and education are key to adjustment and coping. If the client is struggling with emotions and doesn’t know who the enemy is, the coping process must start with emotional regulation, tolerance of “not knowing” and observation.
Imagine this: A soldier is deployed to a war zone with no instruction about why they are there. Should they start shooting everything or everybody they see? That’s the best way to make themselves the perfect target for the enemy and raise their stress level to 100! Instead, they will have to get to a safe place, hide and observe their surroundings. They must be calm, brave and trust their senses and knowledge. They will then have to determine how to seek support and reinforcements. This example illustrates the importance of coping and the emotional regulation process.
How to regulate more efficiently?
Emotional regulation is achieved in two ways; self-regulation and interactive regulation (getting help from others). Some people are very good at self-regulation and require less support from others. This may be because they are better educated on the illness, or perhaps they have a lack of trust in others, or another reason entirely. On the other hand, some people are not so confident in their self-regulation capacities and tend to seek support from others.
The first step is to identify your natural preference and determine the most effective tools to help you regulate.
Self-Regulation: Some methods of self-regulation include activities like yoga, meditation or mindfulness practiced throughout the day. It may help to slow your pace and take your time with activities.
This may prove difficult for high-achievers or anxious clients. For them, I suggest they take their time doing simple things like taking a shower or eating their favorite dessert. The slow pace can be annoying at first, but gradually they will learn to enjoy the sweetness of the dessert or the feel of the water on their body. Seeing the world with a different mindset may help to bring the good things in life to the forefront instead of seeing stress and problems first.
Interactive Regulation: For clients who need help regulating, I suggest strategies to help them feel secure in their body and mind when their stress level is low. I always say you shouldn’t learn to stop a fire when it’s burning hot, you should learn when there is no fire at all! Remind yourself to notice that right here, right now you are safe. This mindfulness helps us pause more often and generally leads to better health.
In summary, self-regulation requires training and interactive regulation requires practice with people you trust. Mast Cell patients must learn how to observe their symptoms, lower their stress level, and regulate both physically and emotionally. Learning to cope, adjusting lifestyle through awareness and education, and emotional regulation through stress reduction are key to lessening the impact of disease on your life.
Mast Cell Disease wants to thrust an important lesson on you: slow down, take care and enjoy whatever you can with whoever is good for you. Isn’t that what life is all about anyway?
Annie Perreault is a registered psychologist of the Ordre des psychologues du Québec and board member of MSC. Working as a clinical professor affiliated to Université Laval, she is teaching and supervising residents in family medicine and students engaged in doctoral degrees in psychology. She also provides psychotherapy and support to people living with chronic or rare medical conditions or psychological conditions.