Today as I was facing a particularly challenging and painful moment, once again I tried desperately to distract myself. Sometimes during these moments I also have my most profound realizations, I made some more today.

Today I realized that I can’t live with constant difficulty and pain without questioning the meaning of life or the purpose of existing like this… it’s never been an easy question to answer.

After being sick for long enough your life changes in every possible way. Trying to accept those changes and make the most of them is one of the hardest things to do. At least it has been for me.

As I sat in deep pain I could feel the futility and and frustration rising again like a painful tide. It can engulf me sometimes if I am not careful.

I try and fight these times by trying to focus on something, anything. A mosaic of ideas and images to deflect me in my time of need.

Today I began another of my deeper conversations with my husband and, as always, he listened.

I started explaining to him how I desperately and earnestly try to avoid two things in this current life, they are, being considered either a victim or a martyr.

Both of these labels trouble and bother me and I don’t ever want to consider myself as either of them, nor do I want others to impose these roles on me.

In my lifetime I have met far too many people who wore these labels and I saw how it consumed them. It became their burden and their prison and it changed the way people treated them and remembered them. It’s not a legacy anyone would want; Although at this stage of my life I care more about how I see myself now and not how other people will remember me…

As a younger person I didn’t realize how these labels can come in so many different ways, and they can be impossible to manage or escape, so I work very hard to keep myself at a safe distance from them.

When I think about the many injustices that life can hand, including debilitating illnesses, it can be too easy to see all the cruelty of life. It’s easy to realize how deeply unfair life can be, but I can’t let myself give up all emotional power and become the constant victim of life. And I won’t.

It can be a very fine line between being compassionate and caring with ourselves but we can also find ourselves feeling angry and bitter about how cruel life may have been to us. Sometimes there are no limits to how much pain and loss we must endure. Life offers no guarantees. Ever.

Yet I want more for my life than to reduce it to feeling a victim of its pain and suffering, so I don’t think of myself in this way at all. As angry and as frustrated as I can feel at times I still don’t feel like the world is targeting only me. I am not the most burdened person, I am always aware of that, but it doesn’t mean that I have to be uncaring to my own plight or challenges. In fact I also believe that we owe it to ourselves to be kind to ourselves and advocate for ourselves too.

Ultimately I aim to see myself as no more or less valuable than anyone else. This is another way in which I fight labels.

It is also why I will not entertain the accusation or suggestion that I cultivate labels either. My suffering and challenges are real but I don’t blame anyone nor do I use these challenges as a means of recognition or validation from others.

Although there might be days where I think these illnesses and struggles are unbearably cruel and more than I can cope with, I don’t think I am special because of this.

I also don’t look at myself as a fighter or a survivor. These are terms I read about in the media or how certain celebrities and heroes are described, but I don’t feel these terms apply to me personally.

Some days I cope better than other days and so most of all I consider myself as simply being human.

Equally, when I keep my struggles and pain to myself, or find myself having to make many sacrifices that many others may not have to make (and I don’t want to have to make) I don’t assume the role of martyr either.

Because I am chronically ill and disabled I also don’t feel I have to be an inspiration, constantly positive or obliged to do more than any other human being. Therefore I don’t have to dedicate my life to charitable acts or in the service of others simply to distract myself from my struggles, or in order to make myself feel better about being alive. I am not a martyr or saint either. I still have the ability to choose some things for myself. Whatever I do for others should be an act of choice, like anyone else. I always want whateverI do to come from the heart and with genuine intent.

I recall being told several times that I should dedicate myself to helping others in order to make good use of my remaining time and abilities. I took exception to it because no one should ever have the right to tell others how they should spend their lives. Becoming ill does not mean we have lost all rights and worth. It doesn’t mean we should need to endear ourselves or ingratiate ourselves so that we will be considered worthy or useful… Charity or kindness is not a punishment.

In fact the longer I have been more physically impaired the more I have become determined to build a stronger personality and be more free from scrutiny or labels.

The reason I Blog now is as I became less able and was thrust into an entirely new identity and state of being I was not happy with many of the actions, treatments, perceptions and judgements made about people with illnesses, and out of ignorance. Respect and dignity are things that the ill have to fight much harder for and It’s not right or fair.

I hope my voice will be added to opening up a new conversation and perspective about autoimmune illnesses and chronic realities.

As altered as our bodies and lives may become we are still, and always will be worthy and deserving of respect.

Always.

Gentle hugs,

Trish