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You are here: Home / HEALTH / A “Unique” Approach To Life: Coping When Diagnosed With A Rare Condition

A “Unique” Approach To Life: Coping When Diagnosed With A Rare Condition

27 March 2019 by Australian Women Online

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A “Unique” Approach To Life: Coping When Diagnosed With A Rare Condition

unsplash-logoMartha Dominguez de Gouveia

We all feel like we are on our own sometimes, but when we have a rare illness or disease, this feeling can be magnified by 1,000. If we are diagnosed with a condition, the difficulties we face aren’t just symptoms of the illness itself, but the emotional repercussions of being diagnosed with something that may not have a cure, or is completely unknown, is scary. And if we feel that we are facing down the barrel of a gun, and have no way out, or we just don’t know what to do with ourselves, how can we cope, in our day-to-day lives, and ensure that we have a worthy and productive life?

Not Bottling Up Our Emotions

You feel like you are a breed apart, and as such, you may expect to be treated like this. Some people do it because they don’t understand what’s different; others treat you different because they think that’s how you want to be treated. Whatever your feelings on the situation, it’s important not to leave these things to fester in your mind. When we feel that we’re on our own, we need to get into the habit of venting or confiding in someone who, at the very least, has an appreciation of our predicament. We can’t ask them to put themselves in our shoes, but what they can do is listen, take on board how we’re feeling, and just be there. By letting go of frustrations, even on a daily basis, this can give you a sense of refreshment, that ability to keep pushing on with a new day. Sometimes we can have very bad days, and at that moment, it can feel like the world is caving in, but tomorrow is a new day. Venting, and expelling any negativity, or frustration, or anger, is a very cathartic thing.

Controlling Symptoms

What can be very easy to do is give in. You’ve been diagnosed with something that is rare, or unique, and so, negativity can set in, and you can feel like your time is up. But instead, it’s about working with the medical professionals to help manage the symptoms. After all, there are so many conditions out there that don’t have a cure, like ankylosing spondylitis, a type of arthritis that mainly affects the spine. But with a lot of these physical ailments, managing the symptoms is not just about taking the meds, but it’s about understanding your own relationship to the problem. A lot of people suffer from extreme physical pain, through issues like fibromyalgia, and some have found that managing their own pain receptors, by undertaking that little bit more research and experimenting with diet, cold, and heat, can help to minimise or, in some cases, completely remove the symptoms. Of course, it’s important to speak to a health professional before you undertake any extreme experimentation on your own body, but you can do your own research and see what a lot of people have done, by simply going into cold water, and how their pain symptoms improved massively.

Adopting Perspective

Some people are religious, others are not. At what we can learn from a spiritual practice is a sense of perspective. When we think about the universe, and all the weird and wonderful elements, and we think about fate and destiny, when we look at death or an inevitable decline in our phsyical and mental faculties, we can either be fearful of it, or we can decide when we are ready to let go. Fear is something that can overcome us, can stop us living our lives, but if we are defined by a disease, then we are, in essence, giving into this. Instead, if we learn a mindset that enables us to be happy despite this condition then we’ll get a lot more meaning from this thing they call life. And surely, that is the point to life, isn’t it? That we have our own life to lead, and we need to do it as best as we can.

When we have a condition that’s rare and it threatens to isolate us from everything we know and love, we can struggle to cope. We can either decide to give in right away, or we can fight, or we can learn to manage what we’re going through. Every day is a battle, and there will be amazing days, terrible days, and, god forbid, normal days. And whatever we suffer from in life, there is always a way for us to gain perspective. And while the term “rare” can be scary, surely “unique” just makes it sound a bit more special?

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