Why This Is the Best Form of Self-Care for My Rare, Chronic Illness


These days, patients utilize many forms of self-care in order to self-soothe through difficult times. Whether it be an item that comforts them, such as a stuffed animal or music, or a ritual, such as taking a bubble bath or relaxing with aromatherapy, chronic illness patients know how to minimize anxiety and stress.

Personally, I go through the same motions when it comes to minimizing my own anxiety surrounding my condition. I have a rare blood disorder, and currently I’m on an aggressive treatment, with some drastic side effects. It’s quite different to know what the side effects or risks of a treatment are, and to experience them firsthand. My go –to stress relievers are researching my condition, hot showers and aromatherapy.

Upon my most recent doctor’s appointment, I discovered that I’m showing signs of developing more significant side effects: hearing loss, vision loss, and dramatic weight gain. It’s difficult to be told you’re now a candidate for hearing aids and have sustained a loss in hearing by 30 percent and you’re in your early 30’s.

I’m completely beside myself. All the usual methods of self-care do not make me feel any better about this new reality. To see these side effects begin to impact work, relationships, and my own self-image wreaks havoc on my self-esteem. As depression sets in, I fall back on my rare disease friends, who are there for me in a way I couldn’t have foreseen.

After having numerous conversations with friends, through words of reassurance, understanding and self-disclosure, I began to feel the troubling, heavy weight of doubt and depression lift from my shoulders.

That’s when I had an important realization: my rare community is my self-care.

Hearing words of affirmation that I will be able to persevere coming from people who have known me at my best and seen me at my worst health-wise is just the warm comfort that I needed. My “blood sister” as I affectionately call her, a friend who has the same type of disorder as me, reminded me of all the obstacles I’ve overcome and how regardless of any physical changes that may occur, my heart is the same.

This technique is something which we (chronic illness patients) can all learn to utilize, preemptively against emotional anxiety related to our condition. The people we surround ourselves with are those who can help us care for ourselves, simply by being supportive. This form of self-care can be used as a way to recharge emotionally when feeling overwhelmed by a flare, illness, or impending operation.

I didn’t realize the profound effect surrounding myself with people who understand the unique position of having a chronic illness would have on my mental health and outlook towards my condition.

This is one of the hidden secrets you learn as a patient. The people you surround yourself with are the best company to keep when looking to take care of your emotional well-being.


Find this story helpful? Share it with someone you care about.