Perceptions #ME/CFS
I consider myself to be a chronic warrior as I live with a number of incurable diagnoses; diabetes, remathoid arthritis, hypothyroidism, spinal stenosis, neuropathy and cervical spondylosis. My diagnoses are well-researched and relatively well-known. This post is, in my mind, about the real but often forgotten chronic warriors.
I'm reading blogs and on social media by people affected by ME/CFS, which are partly a severe disease, partly very unexplored and unfortunately, by some people, not considered a serious diagnosis. This diagnosis has become more noticeable here in Sweden recently, tragically enough with the help of people choosing to end their lives because of inhuman suffering, but also through strong witnesses from both the sufferers and their relatives and spouses.
It has made me think about whether, and if so why, we have these preconceptions about certain diagnoses. I don't mean life-threatening diagnoses such as cancer, but about chronic and/or autoimmune diagnoses that have a major impact on, or creates a completely altered life for the affected person. I'm directing the question to both the healthy part of society aswell as us with chronic illnesses.
In the case of people in general, the reason for various and often wrong perceptions is probably knowledge-based. The less you know about a disease, the more difficult it is to understand the meaning of what it means in both medical and living terms. Often the disease is also invisible, that is to say. It doesn't show how you feel or what obstacles it causes.
I'm reading blogs and on social media by people affected by ME/CFS, which are partly a severe disease, partly very unexplored and unfortunately, by some people, not considered a serious diagnosis. This diagnosis has become more noticeable here in Sweden recently, tragically enough with the help of people choosing to end their lives because of inhuman suffering, but also through strong witnesses from both the sufferers and their relatives and spouses.
It has made me think about whether, and if so why, we have these preconceptions about certain diagnoses. I don't mean life-threatening diagnoses such as cancer, but about chronic and/or autoimmune diagnoses that have a major impact on, or creates a completely altered life for the affected person. I'm directing the question to both the healthy part of society aswell as us with chronic illnesses.
In the case of people in general, the reason for various and often wrong perceptions is probably knowledge-based. The less you know about a disease, the more difficult it is to understand the meaning of what it means in both medical and living terms. Often the disease is also invisible, that is to say. It doesn't show how you feel or what obstacles it causes.
When it comes to ME/CFS, it's not just the illness that's invisible, these people are literally invisible too. They are restricted to their home, often bedridden, completely exhausted by the least effort, with horrible pains, hypersensitive to noise, light or touch….Isolated and invisible to the outside world. We may never really understand, but we can become aware and increase our knowledge.
As an illness challenged person you are always closest to yourself and can relate more easily to the consequences of your own diagnosis than to someone else’s. I would like us to try to learn and understand the situation of people with other diagnoses, although we are in the midst of our own little hell. Not only for solidarity's sake, it might also change the perspective of one's own situation a bit.
As an illness challenged person you are always closest to yourself and can relate more easily to the consequences of your own diagnosis than to someone else’s. I would like us to try to learn and understand the situation of people with other diagnoses, although we are in the midst of our own little hell. Not only for solidarity's sake, it might also change the perspective of one's own situation a bit.
As usual and always: This is my personal reflections and opinions and has no medical or scientific basis whatsoever
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