Invisible Illness: How The Unseen Can Be So Painful

By Dakota Fidram, MS

For someone experiencing an invisible illness, here is an all-too-common and disheartening scenario: You just left the doctor’s office for the fourth time this week and must stop by the pharmacy to pick up a prescription. You pull into the handicapped spot for which you have a permit and start to get out of the car. As you arise out of your seat, the blood rushes from your head and you begin to feel extremely dizzy. You start to lose your breath as you walk to the entrance, and you think you might pass out. Once you finally get to the door, you feel like you ran an entire marathon. Right then, a bystander walks up and remarks: “You have some nerve taking up a spot when you don’t need it! You look perfectly healthy! Shame on you!” This may sound over-dramatized, but the fact is that these types of situations are tragically common  for people experiencing invisible illness and often even more hateful than the depiction above.

Invisible Illness

What an observer does not see is the complex and debilitating symptoms that the person is dealing with. A whole range of conditions could make a trip from the parking lot to the store an absolute nightmare: Multiple Sclerosis, POTS (Postural Orthostatic Tachycardia Syndrome), Fibromyalgia, Cancer, Heart Disease, Post-Treatment Lyme Disease Syndrome, to name a few. These are all examples of invisible illness or disability  that might be undetectable to the naked eye but incapacitating for the afflicted individual.

Struggles and Stigma

The stigma attached to disability and chronic/invisible illnesses can be a struggle to overcome. As with the situation above, the micro-aggression’s or sometimes out-right hostility of others can create a multitude of obstacles, barriers, and hardships for those just trying to cope with the pain and complications of their conditions. This type of oppression shows up in all kinds of ways: from the lack of captioning for the hearing-impaired to the absence of safe food options for those with Celiac Disease. The obstacles can range from exasperating to completely restricting. A person experiencing intense pain may even be discredited and denied help from a doctor who believes it’s “all in their head.” Unsurprisingly, the misunderstandings and prejudices made by others often leads those with invisible illness to isolate and perhaps even develop severe sadness, anxiety, and loneliness. The heavy burden of chronic pain, disability, and exhaustion combines with the emotional turmoil of stigma and prejudice until it becomes exceedingly overwhelming. This process is also usually cyclical. The pain leads to sadness and isolation which makes the pain worse, which then exacerbates anxiety and depression even more, etc.

Spoon Theory

In face of all this, it may seem like there’s little hope. Fortunately, there are indeed ways to effectively cope with the pain and isolation of invisible illness that have been successfully implemented by many in the community. One way many people confront the misconceptions about invisible illness is by using metaphor and analogy to help others better understand the complexity of the issue. One popular example was created by Christine Miserandino (link here: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ ), a woman dealing with severe Lupus. Naming it “Spoon Theory,” she describes living with invisible, chronic illness by imagining a certain number of spoons that represent energy and stamina for a day. For each activity, like taking a shower or driving to work, you must utilize a spoon until they are all used up. This visualization has been used to help others understand the toll of invisible illness in day-to-day life. Individuals in the illness community have taken to using the hashtag #spoonie to identify themselves. Spoonies, as they are called, use the term proudly to advocate on their own behalf online and in person.

Hope and Community

Besides finding ways to help people empathize with invisible illness, another helpful coping strategy involves reaching out for community support. Of course, accessibility isn’t simple for many spoonies, therefore utilizing social media is a frequent means of connecting to others and combating isolation. Platforms like Instagram and Tumblr have thriving online support networks. Not only can many spoonies find and share resources on such sites, they can also take part in a safe, open environment to express themselves and make meaningful connections. It is important, nonetheless, to note that online experiences can vary and that one should always be cautious with what personal information is shared online. And even though finding support is often easier for spoonies online, there are still those who will display unhelpful and hurtful behavior. Be safe, and don’t hesitate to block trolls.

There is Relief

Finally, keep in mind that there are therapeutic techniques that have been researched and shown to facilitate coping with chronic pain and fatigue. Mindfulness and self-care can be indispensable tools to use for handling invisible illness. The way this looks will be unique to each person and can take on an infinite number of forms. Certain types of mindfulness practices, such as MBSR (Mindfulness Based Stress Reduction) and PMR (Progressive Muscle Relaxation), are known to be effective strategies for managing pain and fatigue. They are approaches you can work with a therapist to practice using. Being patient with yourself, stopping to breathe, ensuring you have plenty of chances to rest during the day, these can all be self-care techniques. Even simply but emphatically reminding yourself that you aren’t solely defined by your illness can be a powerful approach.

Reaching Out

There are multiple therapists at True You Southeast that specialize in helping clients cope with invisible illness and disability. Give us a call at 404-800-7586 for more information or contact us through our website.