While the term ‘dynamic disability’ is not widely recognized or used in standard medical or disability terminology, it refers to disabilities that are subject to change or fluctuate over time. Disabilities can manifest in various ways, and a person’s symptoms may fluctuate. For example, because my stomach is paralyzed, I have a feeding tube and struggle with chronic pain. During some periods, I am more capable and face fewer limitations, while at other times, my symptoms worsen, and my illness becomes more disabling. My disability is not static – it changes day by day. Sometimes I face physical barriers in my access needs, other times my energy levels or a level of frustration prevent me from participating in activities of daily living. I have good days and bad days as my capacity levels fluctuate.
Living with a dynamic disability is challenging. It is hard to plan anything in advance as I don’t know how well I will be on a future date. Some things are only accessible to me on certain days. It is easy to struggle with imposter syndrome, especially when dealing with a sometimes-invalidating medical system. Continuously being asked to prove your illness or disability can be taxing on your mental health. Here are some issues that those with dynamic disabilities may face:
1. Accessibility Needs:
Living with a dynamic disability underscores the crucial importance of accessibility. The needs of individuals can vary significantly from day to day, requiring flexible accommodations. Creating adaptable environments is essential to support individuals with dynamic disabilities. Here are some ways to do so:
- Assistive Technologies in Healthcare Facilities: Healthcare facilities should integrate assistive technologies to enhance accessibility. This includes adjustable examination tables, clear signage, and digital patient portals for remote consultations. Design waiting areas with comfortable seating and consider the sensory aspects of the environment.
- Flexibility in the Office: Allowing employees to use adjustable desks and ergonomic chairs provides flexibility for employees with varying needs, creating a more comfortable work experience. Many people with chronic illnesses and disabilities cannot work full time, partially due to the inaccessibility and inflexibility of most jobs. Adding an additional layer of flexibility, such as flexible work schedules or remote work options can help accommodate individuals on days when they feel worse and it is easier for them to get their work done from home.
- Transportation Accommodations: Public transportation needs to be accessible to all. This could involve priority seating spaces, audio announcements, and ensuring that vehicles are equipped with ramps or lifts to accommodate mobility aids. Ride-sharing services should also be made inclusive and accessible for those who cannot take public transportation. For example, there are days when I cannot take the bus or train. I often cannot walk long distances and get nauseous extremely easily. Some days I must take a car rather than the bus.
2. Invisible Disabilities:
Many dynamic disabilities are invisible. With an invisible disability, you may not have any outward symptoms. Living with a condition that isn’t immediately apparent to others presents a unique set of challenges that extend beyond the physical aspects of the disability. Some issues faced by individuals with invisible disabilities or chronic illnesses include:
- Personal Relationships: Unseen disabilities can strain personal relationships because others might struggle to understand the extent of the challenges you face. Friends and family might find it difficult to empathize with these challenges, which can lead to feelings of isolation and misunderstanding. A lot of people don’t understand how it’s possible to have a paralyzed stomach and often forget that I can’t eat. It’s hard to come up with activities that I can participate in that don’t involve food. As I’ve written about in another post, SO MANY activities involve food in some way or another.
- Societal Misunderstanding: Societal misconceptions about disabilities often revolve around visible impairments. Individuals with unseen disabilities may face skepticism or disbelief, encountering difficulties when seeking understanding and accommodations. Increasing public awareness through education campaigns can help dismantle stereotypes and foster a more inclusive society. The lack of understanding can lead to social isolation and negative impacts on mental health. Feeling misunderstood or not believed can lead to anxiety and depression.
3. Invalidation of the Medical System:
Lots of people with dynamic disabilities may face skepticism or disbelief within the medical and healthcare system, especially when you have fluctuating symptoms. It is incredibly frustrating to have symptoms of a chronic illness dismissed on days where they are less severe. This dismissal can lead to frustration, stress, and anxiety, exacerbating the challenges of managing dynamic health conditions. Additionally, some illnesses and disabilities present in different ways in different people. You may have significant differences from someone else, even though you have the same condition. Conditions that fluctuate, such as chronic pain, autoimmune disorders, or mental health conditions, require a nuanced understanding.
Learn About Your Illness:
It is crucial to learn as much as possible about your illness in order to advocate for yourself. I have met many healthcare practitioners, including nurses and doctors who have never heard of my illness. As such, it’s important for you to be able to share information about your illness or disability, and the fluctuating nature of your condition, explaining that symptoms can vary over time. While it’s not fair that we have to do this, and it would be lovely if everyone was educated on our illness, that’s just not reality.
Seek a Second Opinion:
If your healthcare professional dismisses you, consider seeking a second opinion. Try and get a referral to a doctor who specializes in your illness and understands your condition. Having a doctor fail to listen to you is exhausting and stressful. Unfortunately, some illnesses are very difficult to diagnose. You may not have the same symptoms of a disability or illness as someone else with the same condition. It is further complicated if you already have several illnesses and they’re not sure which symptoms trace back to which illness. And some things we just don’t have clear-cut diagnoses for.
Unfortunately, this can have all sorts of implications for patients. It can be difficult to explain why you don’t have a diagnosis to friends and family, and you might struggle with getting support. It may be difficult to get treatments if they don’t know what to treat you for. You might even get denied insurance coverage for your medications and treatments if you can’t show a specific illness or disability. Unfortunately, our system is not very flexible, and systemic change is needed.
4. Imposter Syndrome:
The unpredictable nature of dynamic disabilities often gives rise to imposter syndrome, where individuals may doubt the validity of their condition during periods of improvement. Imposter syndrome stems from self-doubt and the fear of being fake or a fraud.
For me, sometimes I feel like I am way too sick to spend my time working on a blog and telling others how to cope. Other times, I don’t feel like I have a serious enough version of my illness to be speaking out about it, even though I have one of the most severe cases possible!
The first step in overcoming imposter syndrome is acknowledging the legitimacy of your illness or disability. Understanding that unseen disabilities are real and valid challenges can help combat the notion of being an imposter. And it’s okay to acknowledge that having an illness or disability is hard!
Some ways to help cope are to establish connections with others going through similar experiences and build community with those people. Recognize the impact of your disability and the daily efforts you put in to overcome challenges. Your self-worth is not dependent on your productivity and ability to meet unrealistic standards. Practice self-compassion by treating yourself the same way you would treat a friend going through similar challenges. You can also seek out support from a mental health professional who specializes in helping those with chronic illness and disability.
5. Challenges in Mental Health:
Living with a dynamic disability can take a toll on mental health. A chronic health condition can lead to a completely altered life, impacting everything in your daily life. Managing stress, anxiety, and other negative emotions related to the unpredictable nature of dynamic disabilities involves a multifaceted approach that considers individual needs and challenges. The unpredictability of symptoms can lead to stress, anxiety, and a range of emotions that require specific coping strategies. Some strategies include:
- Mindfulness Practices: Incorporate mindfulness techniques, such as meditation and deep-breathing exercises, to center oneself in the present moment. Mindfulness helps manage stress by fostering awareness without judgment.
- Routine and Flexibility: Establishing a daily routine provides a sense of structure while remaining flexible to accommodate fluctuations in health. Maintaining a steady sleep schedule can help reduce stress. Balancing routine with adaptability helps individuals navigate unpredictability.
- Journaling: Keep a journal to track symptoms, emotions, and daily experiences. Reflecting on patterns can enhance self-awareness and provide insights into triggers or factors influencing symptom variability.
- Positive Affirmations: Cultivate a positive mindset through affirmations. Remind yourself of your strengths, resilience, and ability to navigate challenges. Positive affirmations can counteract negative thoughts associated with uncertainty.
Mental Illness:
Both chronic illness and disability are a clear risk factor for mental illness. Dynamic disabilities demand mental health support that is customized to address the specific challenges of navigating ups and downs:
- Therapeutic Approaches: Engage in therapy that recognizes the dynamic nature of your condition. Cognitive-behavioral therapy (CBT), dialectical behavior therapy (DBT), or acceptance and commitment therapy (ACT) can provide tools for managing emotional responses.
- Peer Support: Connect with peer support groups where individuals share similar experiences. Peer support fosters understanding, empathy, and shared coping strategies, reducing feelings of isolation.
- Individualized Counseling: Seek counseling that tailors approaches to the unpredictability of dynamic disabilities. Individualized counseling can address emotional challenges, coping mechanisms, and strategies for maintaining mental well-being. Look for a therapist that specializes in dealing with chronic illness and disability.
Strategies for Building a Supportive Community:
Advocate for Yourself:
Individuals with unseen disabilities should feel empowered to communicate their needs and advocate for necessary accommodations. Open dialogue with friends, family, and colleagues can help create a supportive network.
Educate Others:
You can promote awareness by educating those around you about unseen disabilities. Share personal experiences, resources, and information to foster empathy and understanding. This is best if you already know that the people you are speaking to are open and willing to listen. Some people are not, and you shouldn’t be forced to continuously explain yourself to them.
Join Supportive Communities:
Seek out local or online communities where individuals facing similar challenges share their experiences. Connecting with others who understand can provide emotional support and practical advice. Send me a message!
Engage in Mental Health Practices:
Prioritize mental health by engaging in activities that promote well-being. This can include therapy, mindfulness practices, and self-care routines.
Encourage Workplace Inclusivity:
If you have the energy, and they are open to it, work with your employer to establish inclusive policies and practices. Advocate for training programs that educate colleagues about unseen disabilities and foster a more inclusive work environment.
Participate in Awareness Campaigns:
Get involved in awareness campaigns that aim to challenge stereotypes and promote understanding of unseen disabilities. I think that sharing personal stories can be a powerful tool for societal change, even if you are only influencing one person at a time.
Final Thoughts on Dynamic Disabilities:
In a world that often values stability and consistency, the dynamic nature of disabilities brings a unique set of challenges. This comprehensive exploration aims to provide a nuanced understanding of the multifaceted experiences of individuals with dynamic disabilities.
Living with an unseen disability requires resilience and proactive efforts to foster understanding. By advocating for oneself, educating others, and building a supportive community, individuals can navigate the challenges and contribute to a more inclusive and empathetic society. Through continued dialogue and support, we can collectively contribute to a more understanding and compassionate world for those with dynamic illnesses and disabilities.
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