5 Ways I Reduce Stress With a Rare Disease
Last updated: June 2023
Living with a rare disease can be stressful in itself. There's the history of medical trauma, for example, from being put through the trash compactor that the U.S. calls a healthcare system.
It is often difficult to get access to medication for rare diseases, especially in smaller or impoverished countries or regions.1
And the ongoing symptoms that come along with a rare disease, in my case, narcolepsy, are often misunderstood and make it difficult to navigate life.
5 things I do to reduce my stress
In my article, Managing Stress and Chronic Illness, we discussed the negative impacts of stress on overall health. As a person living with a rare disease, it is important I reduce my stress levels as much as possible.
By doing so, I can help reduce the chances of experiencing flares or other illnesses. Narcolepsy is a neurological disease in which stress can worsen symptoms pretty significantly. Therefore, it is important that I try to remain as level-headed as possible. Five ways I do this include:
As a chronically ill person, fancy getaways for days on end are not always financially or physically viable. Therefore, I take what I can get!
Picture this: a walk through the park to a bakery shop. I take the time to sit and eat my newly acquired pastry while waiting for the bus to arrive and take me home. Other ways I take a vacation at home include birdwatching, hiking a nearby trail, walking to a restaurant to take myself on a date, shopping at the farmer's market, and more.
2. Unconditional acceptance
Easier said than done, right?
I try to practice unconditional acceptance when I am experiencing the symptoms of my chronic illness, like excessive sleepiness, and there isn't anything I can do about it. Instead of fighting the sleepiness and trying to push through symptoms that I cannot control, I can practice unconditional acceptance and choose to take a nap. In the end, doing so is beneficial to my health and overall well-being.
Instead of focusing on what I cannot control, I focus on what I can. By doing so, I can reduce my stress levels in undesirable situations.
3. Spiritual practices
For me, spiritual practice includes meditation, yoga, and exploring the outdoors and all of its incredible inhabitants. When doing so, I feel connected to something bigger than myself. I end up feeling calmer, more secure, and more resilient in the face of life's various difficulties.
4. Somatic practices
Somatic refers to the part of the nervous system involved in the 4 senses: smell, sound, taste, and touch.2
Somatic practices utilize the 4 senses to help "ground" me into my body. It is important for me to feel grounded to reduce stress and anxiety. Some examples that I use for getting grounded include deep breathing, swimming, hiking, aromatherapy, and more.
Getting encouragement can be as simple as giving it to yourself!
For example, I use positive affirmations to help me get through difficult times. These can help improve my outlook over time.
What kind of techniques do you use to reduce stress? Does excessive stress affect your rare disease symptoms? Feel free to share in the comments!
How often do you run out of spoons?