“But, You Don’t Look Sick!” 5 Insights into Life with an “Invisible” Chronic Illness

“But, You Don’t Look Sick!” 5 Insights into Life with an “Invisible” Chronic Illness

 “Invisible” chronic illness refers to health and/or pain conditions that significantly impair activities associated with daily living without causing the person to look particularly different from the healthy people around them. Lacking clear signs of illness or pain can lead to numerous challenges that complicate the already difficult journey of managing a chronic health condition. The consequences and limitations associated with each condition vary, but the following insights tend to be common across people with invisible chronic illnesses. Gaining awareness is the first step towards combating misconceptions and misunderstandings; insight can go a long way in improving your relationship and ability to provide support for loved ones facing chronic health challenges.

1. How they look doesn’t necessarily reflect how they feel. What is one thing nearly every person with an invisible illness has heard? “But, you don’t look sick!” While it may not be the original intention behind the proverbial “don’t judge a book by its cover,” this saying has additional relevance in the discussion of invisible health conditions. One common source of guilt and embarrassment for individuals with invisible illnesses stems from judgment and hurtful commentary by those around them when accessing resources and accommodations. In general, these stem from lack of awareness and understanding of the experience of having a chronic illness and highlight the importance of suspending judgment and seeking additional information.

2. Social support is huge. Maintaining adequate social support for individuals with chronic health conditions is often more challenging than for healthy individuals because of the various issues and tensions that arise from misunderstandings and changes in relationship dynamics as well as limitations associated with energy, mobility, pain, or susceptibility to illness. Relationships with individuals who respond with frustration, suspicion about “excuses,” and resistance to change may suffer. Relationships in which the person feels like a burden or where they feel ashamed to ask for help are also at-risk. In many cases, new sources of social support have to be cultivated following the transition to a chronic illness. This is often particularly true for young adults because of the substantial impact health conditions can have on “normal” activities associated with this developmental stage, such as drinking alcohol, staying up late, working or going to school in high-pressure environments, and engaging in sports and other physical activities.

3. Adjustment can be (very) difficult. Learning that you have a chronic illness often leads to a significant period of adjustment and can bring up a range of emotions in the individual as well as in the people around them. Many people express feeling different from others and from who they used to be. Adding fuel to the adjustment flame, many individuals have to take a break or give up entirely on goals and activities that they treasure; everything from advanced education; occupational opportunities, dating, intimacy, and social activities; favorite hobbies; and plans to have children may be reevaluated in the face of health-related issues. Thankfully, while there are often sacrifices along the way, many individuals with chronic illness or pain conditions also find positive consequences in their journeys, such as a sense of meaning, inspiration, and pride, that are positively associated with long-term adjustment and wellbeing.

4. Management is sometimes a full-time job. Individuals with chronic health conditions manage a schedule of general and specialist practitioners, blood work, treatment protocols, insurance companies, and a host of other resource-draining responsibilities. In many cases, transportation, coordination, and financial coverage of these activities is a major additional layer of stress. Further complicating the picture is the common challenge of working with health care practitioners who sometimes demonstrate poor bedside manner and lack of empathy. Treatment protocols are aimed at managing aspects of the disease process, such as pain, fatigue, and swelling, and in some cases reduce the progression of damage and disability. However, while they can be tremendously helpful, they are not curative and are often riddled with significant side effects that can further complicate wellness and engagement in quality living (keep in mind that these issues may also be “invisible”).

5. It can feel like a roller coaster. Inconsistent and unpredictable health and wellness take a toll on many individuals with chronic health conditions. Due to the nature of chronic illness, fatigue and unexpected flare-ups are par for the course and a significant obstacle in maintaining a sense of security and stability in life. Even the process of diagnosis itself can be lengthy and confusing, especially when the symptoms are broad and nondescript and the person appears healthy; it’s not uncommon for individuals with invisible chronic illnesses to receive numerous misdiagnoses and unsuccessful treatment approaches along their journey to an accurate diagnosis. On an interpersonal level, unexpected flare-ups can lead to canceled plans and oftentimes hurt feelings that can precipitate social tensions and ruptured relationships, particularly for those with invisible illnesses who do not look “sick” and therefore often feel pressure to justify their decisions or limitations to others. In the world of chronic illness, things can change FAST. A lively late-night out could be followed up with being unable to get out of bed the following day and just because they look ok doesn’t mean they feel that way!

Want to help, but not sure how to start? Ask! In general, the ideal way to find out how someone is feeling or how best you can support them is by asking them. If you are not comfortable asking or do not know the individual personally, start by being generous in your assumptions and interpretations. This may mean thinking twice before you give the person using the handicap placard who looks “perfectly healthy” a harsh look or making a critical comment to the young man on the train who is sitting down rather than offering his seat. It also means giving people the benefit of the doubt when they cancel last-minute or are reluctant to make plans. Believe them when they say they aren’t up to it and respect their boundaries and limitations while working together to find new activities to engage in together or strategies for staying connected. These actions reduce the likelihood of causing additional stress or damaging the relationship and can go a long way in supporting individuals with invisible chronic illnesses.

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