I was 26 when I got sick of ITP, (Idiopathic Thrombocytopenic Purpura), a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. I also fight against fibromyalgia and CFS (Chronic Fatigue Syndrome).

Remember those first few months to write this text is very difficult. Until then I thought I knew what was the physical and emotional pain, loneliness, doubt, loss, fear; but also love, hope, happiness, gain ... Feelings that I took for granted.

In those months I saw my universe full of all the things that a normal person can boast and have no worries at all, to become very small, very fast... Suddenly, everything became hospitals, medicines, medical studies, constant medical appointments. It was like if my life stopped against the wall without my permission.

My first year with my disease was the hardest. I lost my closest friends one by one slowly; my family was dissolved and my social life was over. I stopped to attend to my work; my partner left me because "It's very difficult to deal with you sick. I can't." I met situations as painful like what is being told that my illness is my fault, that past situations were the reasons to I was going through and calling me ugly or useless behind my back or in whispers when I was bald and barely sustainable because of my treatment.

My body deteriorated almost the same than my self-esteem and I met my darker side. Even came to think of killing myself because I thought that in fact, all those bad things were my fault.

So one night, I decided to leave the hospital and return home to wait for the worst, but the life managed itself to make me understand that touch bottom was just the beginning of also beautiful things.

I learned, with a lot of psychological and personal help, that my situation was not something I could control, but my strength was determined not only physically, but emotionally. I began to perceive how the pain became an impulse shouting that I should stand; tears in the engine to continue; people lost in the appreciation of those who decided to stay and fight alongside me; the scars to remind me how many times I had won; each hospital visit in another battle bravely faced. If all that were not reasons to smile, I was lost.

I realized that my condition didn't make me the bearer of death, sickness, ugliness, deformity, of negativity, because otherwise, I'm someone like anyone else who has dreams, goals to achieve, concerns.

I also get excited if my favorite band will give a concert in my city, and cry and get frustrated if I discuss with someone. I feel and perceive as others; I am no a stranger to these situations, and I am not just my disease. I am part of humanity and recognize that after my diagnosis took me considerable time and struggle.

Got sick could be the worst thing that could ever happened me, but it has also been the best: I knew I wasn't alone when those patients, even though we had never spoken, came to hug me in the middle of the night when I cried because my blood didn't improve; those who shared with me a candy even we didn't had permitted; with whom I played with wheelchairs in my stays to make them more bearable, or those who transmitted me hope and vitality in the chemotherapy room.

Everything began to settle alone from there: people began to arrive, the passions in things I would never imagine loving, projects for my disease, and even the support and affection of people from around the world. My universe began to fill again with new things and I began to smile despite my physical disabilities.

I discovered with excitement that I want to fall in love and be loved; start a family and have children. I want to take my life and my dreams to another country and start a life there. And I want, more than anything, the simple things in life like going to the beach and sunbath, or get on a roller coaster, and be able to get a tattoo. Day-to-day decisions so far are prohibited for me, but I am determined to achieve.

I matured, grew up and improved a lot and very fast. I had to know the cruel side of life only to appreciate and recognize the most beautiful side when it was time. I survived surgeries, treatments, bad news, medications, recoveries, bleedings, and unexpected trips to the hospital with better attitude and encouragement that in my early times would have consumed me. So the bad times were worth it.

Now, I'm almost 30 and to date I may have no answers. I don't know what follows, how I'll be tomorrow or even know if tomorrow I will continue here, but despite the constant pain and that my blood wants to act as dictator, I keep fighting for my life every day because I feel in my heart that life still has surprises for me, and because I am determined to do my illness and all the many chronic diseases that are out there, a voice heard out loud and clear to the world. Because we are a community; we are humans, we have not only physical or medical, but personal, emotional, spiritual, labor, material needs... We are full of vitality, teachings, experiences but above all, we want to infect people with the joy and love that we feel for life.

I want to beat the time, distance, ignorance, oblivion. I choose to be happy.

 

This post is published as part of The Chronically Driven Series; a project that seeks to challenge and bring invisible disability to the forefront of mainstream media. You can find out more about Laura Cisneros by going to her website Miss Platelets. If you have an inspirational story to tell please do get in touch, we would love to hear from you! Check out the Chronically Driven homepage for more information on the project. 

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