5 Milestones to Achieve When Living With Chronic Illness
By Emily Hisel
When living with a chronic illness it can be extremely difficult to live life “normally”, and even more difficult to find fullness and meaning day-to-day. Chronic illness and chronic pain have the ability to take over your thoughts, affect your mood, and dictate your life choices and finances. Not only is living with chronic illness frightening and disorienting, it also adds new layers of stress to common everyday challenges. This added stress can quite literally make the illness or pain worse, therefore learning how to manage stress and fatigue is paramount in the long-term.
Just like Maslow’s Hierarchy of Needs, I suspect that for people living with chronic illness their needs and personal fulfillment are tiered in a way that one cannot achieve the higher milestones without first completing the basics.
Here are 5 milestones that I believe are crucial in maintaining positivity whilst living with chronic pain or illness:
Accepting Your Diagnosis (or lack thereof).
When living with a long-term condition, it is imperative to be knowledgeable about your symptoms, treatments, triggers, trends, and resources. The very first step in understanding your illness is finding a diagnosis and accepting that this is something you’ll have to monitor and treat every day.
Finding acceptance alone is a difficult task because you must give up your preconceived dreams of being cured and living “normally.” However, for various reasons, receiving a diagnosis might not be possible, therefore you must accept the fact that your illness may never be known and that you’re not crazy for experiencing your symptoms.
Once you have a diagnosis or are aware of your condition and begin to understand and take treatment action, you eventually begin to accept the challenging road ahead.
Managing (and prioritizing) Your Personal Health
Some of us have been conditioned from the get-go to take care of others before ourselves and rarely take time for a “treat yoself” moment. This mentality is not sustainable when it comes to living with a chronic illness because your personal wellbeing can quite literally change the course of your day and the days of people close to you. You cannot show up for your kids, you work, or your duties if you are pouring from an empty cup. In order to present yourself in this world you must take special care in managing and documenting your day-to-day health.
This may mean you work less hours, eat differently, rest more, or maintain stricter boundaries within relationships. Sometimes it means making sure people, places, and events can accommodate your specific needs and being vocal about what your well being requires.
Putting yourself first does not make you selfish. Wanting a full life should be encouraged for all, not just those who have healthy bodies.
Regulating Tough Emotions
Living with a chronic illness will absolutely bring about unwanted and tough emotions frequently. Feelings of hopelessness, embarrassment, anger, and guilt are completely normal when navigating through life with your condition, and it’s important to be able to regulate these emotional waves.
With time, one can create and improve upon their practice of conscious observation rather than reactivity. This means that when a trigger happens (worsened physical pain, allergic reaction, flair up, depressive episode, etc.), you are able to remove yourself from the hurt itself and view the body’s reaction to the trigger and the thoughts that accompany it.
By creating space outside your thoughts and your illness, you open up a new path of acceptance and gain insight and intuition.
Becoming Adaptable (without guilt)
Those who have lived with chronic illness know too well the burden of having to cancel plans because of a flare up or being less productive because of constant fatigue. Adapting to day-to-day changes is less of a challenge, however, than the guilt that often accompanies. You know that deep guilt when you miss a work deadline or special event because you had to prioritize rest? Or that intense shame when you fail a class because you missed too many seminars and assignments while in the hospital or attending doctor appointments? Becoming adaptable to the negative emotions that accompany the downfalls of chronic illness is key to opening up yet another path of acceptance. Acknowledging that even when we may fall short in the eyes of society, we are winning when we can adapt to the ups and downs without guilt or shame.
Finding a Reliable Support System
Trusted friends, family, caretakers, doctors, and practitioners can make a positive difference in the quality of life for people living with chronic illness, but the key to maintaining this support is trust. You must trust them to be reliable, forgiving, and patient as they deal with your specific needs, and they must trust you to be honest and accountable.
Let’s be real--it would be quite impossible to make it through the rocky landscape of chronic illness alone, so it is imperative to show gratitude toward your support system. Gratitude can go a long way, especially in uncertain circumstances.
If you ever find yourself battling chronic pain or illness, always remember to take it one step at a time. You won’t have all the answers right away, and that's okay! Never feel selfish or guilty for taking care of yourself, chronic illness or not, because we have this one life so we might as well make it enjoyable.