Perhaps its a foregone conclusion that individuals with rare diseases decide consciously, subconsciously, or a combination of both, to build a wall. When one is diagnosed with a disease which affects 1 in 25,000, 50,000, 250,000 or million individuals, feelings of isolation, remoteness and seclusiveness are sure to arise. Feelings of despair and even resentment often accompany as the rare disease patient sees a changing life and longs for what was before. I read a very interesting article in Gawker several days ago: Positivity is Bullshit When You Have Cancer. Its an excellent article in many regards, and worth the read, though with rare diseases, as is the case with cancer I truly believe, positivity is essential. Despite aiming high for positivity, however, many with rare diseases still find themselves erecting a wall. Why? I have my theory. 1) Few face-to-face support groups exist or are available to those with rare diseases. Its the proverbial numbers-game. Its really not like finding an AA meeting just down the street or a local group for those with diabetes - groups and meetings which exist in almost every town. This lack of emotional outlet and sharing with others who are experiencing something similar can cause deep despair and a sense that Im in this alone. A sense of isolation is bred. 2) I often hear rare disease patients state that they just dont want to bother others - family, friends, acquaintances, or co-workers - with their problems. This response is two-fold: I dont want to be a burden, and they wouldnt understand anyways. So we tend to hold things in. 3) Societal pressure dictates both covertly and overtly that, in general, one should keep his or her feelings under wraps. It is most-strongly conveyed in such expressions as nobody likes a whiner. So, despite having oft-time legitimate concerns, worries, and yes, complaints, we hold things in, often to our own detriment...behind our wall. 4) Those with rare diseases tend to experience disappointment quite often. Unexpected and prolonged illnesses. Missing out on important occasions. Being misunderstood by others. Financial burdens as a result of their disorders. And the list goes on. In the face of disappointment and setbacks, a wall is a structure so natural to erect. 5) Awkwardness. Socially speaking, having a rare disease puts many individuals in an uncomfortable place. A relationship would be nice, but eventually Ill have to tell yet another person whats wrong with me. How will they react? What will they think? And so many with a rare disease decide its just not worth it. Longings to be like everybody else and feeling like nobody else often lead to self-imposed exile to one degree or another. As was the case with the immortal Pink, a wall is about self-protection, self-preservation, and safety in the face of threats, dangers, and our own mortality. For those with a rare disease, such a wall can have benefits. But it can be built too high. It can block us from seeing the goodness of others, from sharing with those who are supportive and do understand, and from seeing the sunshine, trees, birds, hopes, dreams, and other joys which exist on the other side of the bricks and mortar.
Posted on: Fri, 28 Mar 2014 17:20:09 +0000
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