This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Nobody likes to feel alone

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Most people, when I tell them I have a chronic illness and that I am always in some pain don’t tend to take me seriously. I am sure I am not the only person that has encountered this. it is one of the constants of all invisible illnesses. I move well. I live a relatively regular life. I tend to have a sunny disposition in public. I certainly don’t like to complain about the pain as no one would want to spend time with me. I would be a bore.

However since I don’t show signs of stress, distress or physical ailments people tend to forget that for most of the day some par of my mind is cycling through my body’s general functionality. I would need to open with “Today I hurt” every time I see people for a very long time before they started to comprehend the depth to which these thoughts are always with me. I can’t plan anything, move in any way or do pretty much anything consciously without knowing that my body will be able to follow through.

Some days I am glad others don’t realise. I don’t want to be thought of a someone who needs special consideration.

Some days this bugs me to no end.

Like when I am transitioning in to a new stage of Lupus, with a new symptom/illness coming in to the picture. Trying to calmly explain repeatedly exactly what is going on inside me in a way that someone else can understand is the only thing that drives me nuts about Lupus. It takes a lot of focus for me to know what is going on, plan what I want to say, speak clearly and without any tone in my voice which may suggest I don’t want to talk about it.

I do want to talk about it. I want people to understand that illnesses affect a lot of people, but most are too polite to speak out about it. Afraid of being misunderstood, of being judged (yes some people actually make pretty harsh internal judgments when they discover you are sick and make no trouble to hide it), considered as less of a person because of what you lack. Some want to tell you how to fix it, some new herbal therapy or specialist doctor or best yet a clinic in another country. As though you haven’t already tried all of that and can afford even more. Apparently I should put more faith in God, pray/pray more/try a new church.

While you’re at it would you mind putting that knife wrapped in marijuana and blessed by a monk in my temple whilst I chant to the Snake God of TARDIS?

Again, I emphatically do not want to sound negative. It is so beautiful these people have these ideas and feel comfortable enough with me that they feel the freedom to offer these kindnesses and ideas on anything that can alleviate my suffering.

A year ago I went through a very big change inside of myself. The whole way I perceive the world live in and my role within it changed. I felt comfortable in my skin and my self-confidence was gradually swelling to what it should be. Yet I felt lonely on a level so deep that I had no idea what to do about it. Perhaps I was scared to embrace the new-found strength and truly step in to the world. It took time and a lot of thinking, help and healing for me to realise that I was ashamed of being unwell. I was hiding this large part of my nature and in turn isolating myself from everyone. I think many in my situation go through this.

The only way  found was to fight it with everything and use the gift of illness to help bring people together. I needn’t push myself and my history in others faces, but I cold gently let them know when I am in times of difficulty. Subtly introducing them to my daily battles in a way that isn’t nagging or whining, just sharing. It is taking time still toperfect this skill but I feel less alone. I feel strong, courageous and I have such a beautiful network of people arund me, all of whom I honestly believe hold great respect and generosity to each other.

There are no longer many secrets in my life or relationships. My home base of important people who I can rely is far arger than I could ever expect. The greatest development I found however is that I have people I have never spken to before, who seem to have obvious anxieties with their own lives, opening up to me and gaining confidence to share about themselves. This is not a burden and I never try to take on board their troubles. Just knowing that I can be there to give strength to others, I hope they take it with them, heals me a little.

At some point in everyones life you will com across someone very close to you who is suffering from an invisible illness. Be it Depression, Diabetes, Migraines, Arthritis, early forms of MS or ALS or Insomnia. Many people will be feeling alone and lonely, suffering their pain in shame and silence.

This needs to change.

Nobody wants to be lonely and it is no way to begin to heal.

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

5 thoughts on “Nobody likes to feel alone

  1. Thank you,through selfless sharing of ideas, thoughts and experiences that will make our world a better place to live. Thank you and hope that you will enjoy what I posted and post. Thanks again!

    Like

  2. I am a Christian and I have a concrete answer for you. I believe eliminating all forms of silica will help you heal from lupus. Silica’s the basis for plastics. Your body’s rejecting the plastic. You can search my blog http://jesusdiedandlives.wordpress.com

    Like

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