"Reason 1: Being chronically ill is time consuming.
It might sound obvious, but the fact remains: being chronically ill takes up a lot of time. From managing symptoms to attending frequent medical appointments, being chronically ill can feel like a full time job that you can"t clock out of. Because chronic illness takes up so much time and energy, it can get in the way of participating in activities you actually enjoy. This can lead many people to feeling resentful toward their bodies for being unable to keep up with activities they engaged in prior to their chronic illness diagnosis.
Reason 2: Inequity in the healthcare system.
In the United States, the quality of healthcare you receive is closely related your race, sexual orientation, gender, socioeconomic status, citizenship status, and geography. Going to the doctor is already a stressful experience for many people, but it becomes even more difficult when experiencing any form of discrimination from medical providers.
Reason 3: Being chronically ill is costly.
Anyone who"s opened up a medical bill in the United States knows how shocking the experience can be. However, when you are chronically ill the experience can go from shocking to numbing due to receiving medical bills on a more frequent basis. While insurance can sometimes buffer the financial burden, it is not always the case.
If you do not have health insurance, the fear of anticipated costs connected to your chronic illness can be panic-inducing. Of the 100 million adults who have healthcare debt, 12% of them owe an estimated $10,000 or more.
Reason 4: Lack of understanding from other people.
It can be difficult to explain what it is like to be chronically ill. You might have energy to go out for dinner one day, and be unable to leave your bed the next day. This can also prompt chronically ill people to worry that their partners, family, friends, co-workers, or employers won"t believe them when they say they"re not feeling well enough to participate in certain activities.
Tip 1: Learn about Spoon Theory.
Spoon Theory uses "spoons" as a unit of energy, and was developed in 2003 by Christine Miserandino to describe her experience with lupus. The basic idea is that you have a limited number of spoons on any given day and different activities require a certain number of spoons.
In addition to allowing countless people to feel seen and understood in their experiences, Spoon Theory provides a common language for chronically ill people to use with each other.
Tip 2: Look into different forms of self-care.
When you"re chronically ill, your energy levels can look different on a day-to-day basis. Instead of focusing on self-care that looks social media worthy, consider keeping it simple. Watching your favorite movies or shows, spending time with your pets, and wearing clothing that is comfortable for you are a few examples of ways to care for yourself. Self-care might also include saying no to plans that are in conflict with symptoms related to your chronic illness.
Tip 3: Consider limiting the number of appointments you attend in a week.
As a disclaimer, this isn"t medical advice. Please follow the recommendations of your healthcare provider.
If you"re someone who needs to attend a variety of appointments for your condition(s), it can be tiring to attend multiple appointments each week. Consider asking your doctor which appointments are critical and which can be scheduled further out. Depending on the feedback they provide, you might be able to put a limit on the number of appointments you attend in a week. This could look like scheduling that imaging appointment one week, and a blood draw appointment the following week depending on their level of importance.
Tip 4: Join a support group for chronic illness.
Connecting with other people who understand your lived experience can be a validating experience. Beyond My Battle and Made of Millions are two online groups worth checking out. Both offer support groups and meetups in addition to information about advocacy. You can also use sites like Psychology Today to find local support group options.
Tip 5: Attend Chronic Illness Therapy.
If you live in Oregon, you can reach out to me for Chronic Illness Therapy. I can provide you with the space to talk about how chronic illness is affecting all aspects of your life. I can also teach you different ways of processing any grief or anger you"re experiencing related to your body and your experience with chronic illness.
If you don"t live in Oregon, I recommend using Melanin and Mental Health, Therapy Den, or Inclusive Therapists to find a therapist who"s licensed to practice in the state you live in.You can also filter your results for both in-person and virtual therapy options."
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