Why I Stopped Smiling Through the Pain

I choose to live.

Four powerful words… all of which accurately describe my current health state. I have spent the past six years fighting a war against myself, trying to will myself to feel better. For the last six years all I have wanted is to be health, to have my old life back. The life where I didn’t give a second thought to walking down stairs, chasing after my kids, dancing in my living room, hopping out of bed in the morning.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I have fought relentlessly to try to will myself into a healthy state of being. If I can just fake it until I make it, eventually I will get there. If I think positive thoughts the pain in my legs and back will dissipate or perhaps, at least, not affect me as much.

What I ended up doing was having a complete nervous breakdown, unable to formulate a coherent thought, continuously crying for no apparent reason. I spent months shutting myself in from my friends and family, feeling as though I had nothing to offer to their lives because I had become such a burden.

Living with a chronic illness, faking it until I make it set me up for failure. Smiling through the pain and pretending to feel better than I did became a daily struggle, almost as great as getting out of bed everyday. I was living a lie. I was pretending to be someone and something that I wasn’t. And it was exhausting. It made me feel like a complete failure.

I have always been a driven, hard working woman. I do not like to be told “no,” whether it’s by my parents, my husband, my friends. If they tell me I can’t do something, by God, I would move heaven and earth to prove them wrong. I viewed every “no” as a challenge. Not only I would I do it, but I would accomplish that task — and then some.

My husband would tell me I could not buy something until we had the money to do it – thinking I couldn’t possibly get it done – and then I would. I loved my job. Recruitment was so much more than just finding a person a role….it was putting together puzzle pieces that other people were not successful in doing themselves. I had clients that would call me and start the conversation with “this is a very difficult search” and I would get giddy with excitement. The harder the better made me happy. I was proud of my accomplishments – owning my company, making my client’s lives better, leaving an indelible impression on the candidates lives that I touched. Then I got sick.

It seemed like it was one thing after another. One injury, one infection, one kidney stone, one hospital visit after another. Could it be possible for one person to have such bad luck? What was I doing to make myself get so sick? Why couldn’t I help myself from catching these infections, falling up or down those stairs? Was I not exercising enough? Not eating enough kale? Eating too much salt? Not drinking enough water? Drinking too much water? After every episode, every hospital visit, every trip to the ER, I would beat myself up with these questions. It always came back to, “What the hell is wrong with me?” and, “Why can’t I just get my act together and move on??”

Fast forward six years. I am a mother to three amazing, strong willed, active children. I am a wife to a very patient, and sometimes infuriating, supportive, loving husband. I am a daughter, a sister, a friend. I am a recruiter. I am a 40-year-old woman living with two chronic diseases that there are no cures for.

I am staring down a path that looks nothing like the path that I had chosen or laid out in my mind. I am living a life that is nothing like I wanted or worked to have. I am sad. And scared. And in mourning for my old self. But I am also happy. I am at peace. I am hopeful. I am loved.

I am choosing to live in the present. I am choosing to allow myself the time I need to feel all of the above feelings. I am learning to love myself again. My true self.

I used to describe myself as broken. But I am not broken. I am so far from broken that I actually hate that word. I have chosen to embrace and be with all the pain I feel physically daily, because that helps ease the mental anguish I have been suffering with. I have learned that pain is something that cannot be avoided, but suffering is a choice.

Ehlers-Danlos syndrome and ankylosing spondylitis are conditions that I will not allow to define me any longer. Instead, I will redefine my life around them. I will allow the physical pain that I feel as a result of these diseases to be what it is, because it is not going anywhere. The longer I fight it, the harder I fight to pretend it isn’t here. To ignore how my knees, ankles, back, ribs, neck and head are feeling, the worse I make my mind. I spend all my energy pretending I don’t feel the way I do, and then I have nothing left to give the people who matter most — myself, my husband, my babies, my family and my friends.

Letting go of the facade that I’ve been maintaining has been liberating. It feels like a 500 pound weight has been lifted off my back. Now, when people ask me how I am feeling, I answer them honestly. If I am having a bad day, I tell them so. Not because I want their pity, but because I am so tired of lying. This is my reality. Giving in to it doesn’t make me weak, it means I am strong. Not fighting to get better is not the same as giving up. I am not, nor will I ever, give up.

The love I receive from “my people” on a daily basis, and the relationships with them, have become so much more honest and real since I stopped fighting. I am supported and loved by people who are not afraid of the real me. The bruised and worn down, battered and, at times, dislocated, me. Because I have chosen to honor both the light and the darkness inside of me, I am able be a better person to all the people that I love, starting with myself.

Living with a chronic illness, living with the reality that I am never going to feel better, that there is no cure, doesn’t have to be like fighting a constant battle. It has enabled me to be grateful for the little things. My son’s hugs, my daughter’s snuggles, the feeling of my husband’s hand on my back, the friendships I have made with women who genuinely love me and want what is best for me.

I am working on not taking a moment for granted. I am working on getting more comfortable with asking for help. I am working on being more forgiving of myself, for my unwashed floors, emails that are piled up, plans that get rescheduled. Because at the end of the day, those things really don’t matter. My life is worthwhile. I am worthy and deserving of peace. If I need to spend extra time in my bed, that is alright. I know in my heart that tomorrow will be better. It will be better because I will be here… Feeling however I am.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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