Understanding the Spectrum of Autoimmune Disease
Having a chronic illness or autoimmune disorder brings a lot of uncertainty to one’s life. Like most conditions, autoimmune diseases are on a spectrum and often when we’re newly diagnosed, we tend to imagine the worst possible scenario. Perhaps it’s a coping mechanism to be mentally prepared for the most extreme outcome. However, there are many people that may never get there.
Contrasting Paths in Disease Management
Let’s imagine two different paths on each side of the extreme. Person A is pro-active, has a positive attitude, a loving support system and minimal stress that can be managed in their daily life. They’ve modified their diet, incorporating nutritional supplements and low doses of disease managing medication to keep their disease activity under control and even at bay. Now on the flip side, Person B has a high demand job, an ailing loved one that they need to care for, financial issues and undealt with mental illness and trauma- all of which puts them on a different trajectory causing accelerated disease activity.
The Dynamic Nature of Chronic Illness
While the above are examples of two sides of the extreme when it comes to disease outcome. One important thing to note is that your place on the spectrum is not fixed. To highlight this further let’s imagine that although Person A has been managing well for years an unexpected divorce or death in the family triggers a cycle of depression where they feel overwhelmed with stress and start taking less care of themselves. This results in more inflammation, more symptoms and heightened disease activity. On the other side of the pond, Person B has started going to therapy, treating nutritional deficiencies, has found the right medication combination and has incorporated stress-relieving hobbies and activities. These changes result in a reduction of disease activity for Person B and they can finally get more out of life.
Adapting to Chronic Illness: Practical Strategies
If there’s one thing you can glean from both of these scenarios, it’s the importance of feeling supported during your chronic illness journey. With varying levels of mobility and energy it’s important to adjust accordingly. While a little push can be alright during the hardest moments of your disease, it can also result in setbacks and injuries thereby worsening depression and negative feelings. It’s important to gauge what you can actually do. For example, you can:
- Adapt Your Cooking Routine: Try simpler recipes or meal prepping on days when you have more energy.
- Modify Exercise Routines: Consider gentle yoga or chair exercises if standard workouts are too strenuous.
- Utilize Online Support Groups: Connect with others who understand your experience for emotional support.
- Engage in Mindfulness Practices: Incorporate meditation or deep breathing exercises for stress reduction.
- Adopt a Hobby Within Your Ability: Activities like knitting, painting, coloring or gardening can be therapeutic.
- Listen to Audiobooks or Podcasts: A great alternative for days when reading or screen time is too taxing.
- Seek Flexible Work Arrangements: If possible, explore work-from-home options or flexible hours.
- Create a Comfortable Home Environment: Organize your living space to minimize physical strain.
- Plan Social Activities Around Your Energy Levels: Opt for shorter, more manageable meet-ups with friends and family.
- Utilize Delivery Services: For groceries and other essentials to reduce the physical strain of shopping.
Embracing Change in Chronic Illness
It can be hard for some of us to feel like our progress is regressing. To go from walking the trails and dancing at a wedding to sitting out gatherings and finding pain with the simplest of tasks can be extremely disheartening. Add to the mix the confusion from friends, family and coworkers and you feel like you failed somehow. This feeling of regression can lead to a deep sense of isolation, as the activities that once brought joy and connection seem increasingly out of reach. It’s crucial to remember, however, that chronic illness is not a linear journey. Fluctuations in health and capabilities are part of the process, not a reflection of personal failure.
It’s important to communicate openly with your support circle about these changes, helping them understand your experience. By shifting focus to what can be done and finding new sources of fulfillment, you can redefine success on your own terms. Embracing these changes, while challenging, can open the door to unexpected joys and deeper connections, rooted in authenticity and mutual understanding.
Living with Chronic Illness has its highs and lows along with the need for adaptations when it comes to unseen challenges. Regardless of your path, its pivotal that you have understanding and patience for yourself as well as a supportive community. I encourage you to share your stories and experiences for empowerment as well as serve as an insight and inspiration towards others. Let’s foster a community where openness, empathy, and shared knowledge create a stronger, more supportive network for all those affected by chronic illnesses. Your voice matters: let it be heard!
Useful Sources:
cdc.gov/chronicdisease, who.int/health-topics/chronic-diseases, niams.nih.gov, arthritis.org, lupus.org
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