5 Ways I Struggle With the Isolation of Chronic Illness

Chronic illness can be incredibly isolating. I do not think I could have predicted the extent to which the isolation associated with being ill would affect me. Sure, like many others I enjoy space and quiet time, but this has now become something forced on me rather than a luxury I crave. I need time alone to rest and have very little say in the matter. The isolation that surrounds chronic illness is much deeper than most people could possibly know. Here are just five ways that myself and many other chronic illness warriors struggle with isolation:

1. As I currently have ME/CFS, I cannot work at the moment. Staying home is not nearly as good as it may sound to some people. Work not only provides meaning and purpose (and income) but fulfills many of our daily social needs through interactions with colleagues and clients. This may seem pretty straightforward, yet there are many layers to this type of isolation – for example, the lack of connection with people your own age. For instance, your early- to mid-20s is a time where friends share about beginning their careers and the ups and downs that go along with that – none of which I can add to right now as mine has been indefinitely put on hold.

 

2. As a young person with chronic illness, not many other people your age understand what you are going through. For me, the people who seem to empathize the most are much older and have been through at least some serious health problems over the course of their life. There is a common misconception that young people do not get chronically ill, and if they do, it cannot be too severe and surely will not last. I find myself slipping further and further away from friends my own age as I struggle to connect with them on a meaningful level when our lives look so different.

3. It is a fact of life: people love bonding over food. Whether it is the next dessert fad or a family BBQ – food is part of culture. As a celiac this can be incredibly isolating. I try not to be “too picky” when choosing a place to eat with friends. Nevertheless, I find it challenging to eat at a friend’s house or attend social events when people continue to offer you food you must politely turn down. It can come across as hard to please and even snobbish which can make you feel like nobody really gets it, or you.

4. Many of those with chronic illness know the experience of brain fog all too well. But what I have begun to realize more and more is how it impacts my daily conversations with people and thus my relationships. Even though I genuinely care and try to listen intently to those around me, I find my brain has other ideas. Often I blank out completely, not from boredom or disinterest, but rather from overload and sheer exhaustion. I think this can easily be misunderstood and, again, come across as rude, especially when you forget things you know you should have remembered. So much so that sometimes I avoid social situations because I know tat it will be too exhausting to hold a proper conversation.

5. Let’s be honest – being sick is no fun! It’s hard to spend time with family and friends and keep it together all of the time. There are very few people with whom I feel I can be fairly real without the fear of scaring them away. However, you are always worried you might say too much or cancel plans too many times. This is isolating because you feel like you cannot be yourself. For those of us with chronic illness, it often becomes part of who we are, whether we like it or not. To hide the rawness of our illness for the sake of making other people feel more comfortable around you is one of the hardest and loneliest experiences.

I hope you know you are not alone no matter how isolating your illness can be. There are people out there who are fighting just like you and really do understand what you are going through, even when it feels like they are few and far between.

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