The Parts of My Illness I Hide From the World


I am one of the many faces of invisible illness. The person you see is the person I want you to see.

You see a woman with a nursing career who is competent at her job and completes what needs to be done.

I see a defeated woman who has settled for a job she can still perform. A nurse who comes into work, does what is needed and goes home.

I remember the woman who had a job she was passionate about. She made a difference in people’s lives, she spent countless hours in the homes of terminal patients providing care, compassion and comfort. This woman excelled at her job and was getting the opportunity to advance in her profession when life decided it had other plans.

 

You see a mother of three boys who are exceptional students and very well behaved.

I see an exhausted mother trying to hold it together for her children. I see a mom who comes home from work so exhausted that she goes straight to bed when she gets home and that’s where she mostly remains. A mother who can’t find the energy to cook a full meal, do their laundry or take them out for fun trips.

I remember a mother of three boys who was able to keep up. She was involved, she was fun. She was in the yard playing baseball, on the kitchen floor painting pictures with them, going on adventures hiking, fishing and geocaching. She would cook their meals while refereeing fights, helping with homework and cleaning. It was always busy, always a good time and she loved making memories with her boys.

You see a new wife with an amazing husband, a happy marriage, a new home, a new beginning.

I see a wife who is consumed with guilt as she watches her husband work an eight-hour day, stop to run errands on his way home, get home and cook, clean, do laundry, mow the yard, do the grocery shopping, take care of the kids and take care of me on my really bad days. A wife who feels like she is constantly letting her husband down with each task she can’t complete that he has to. A wife who feels like she is holding her husband back from enjoying life.

I planned on being a wife who worked eight hours, came home and cooked a good meal, kept the house clean, kept the laundry done, did all the shopping and ran the kids to all their activities. A wife who would go out on dinner dates with her husband. A wife who would go hiking, go on road trips and even go kayaking because she knows this is what makes him happy. A wife who would always put his happiness first over her own needs.

You see a woman with many friends, laughing, joking, enjoying their company and conversations.

I see a woman who is constantly trying to hide her pain. A woman who loves her friends dearly and would do anything for them but knows even they question her reality. She smiles through her struggles and tries to not talk about her pain and tries to never complain. This woman now trusts very few. She knows she is talked about, she knows she is doubted, she knows she is questioned. This woman is deeply hurt and feels betrayed by the doubt from some of her closest friends. So this woman smiles, laughs, listens, comforts, cares no matter what battle she is fighting herself. She doesn’t talk about the numerous doctor visits, tests, diagnoses, prognoses because most are tired of hearing about it and some don’t really believe it anyway.

I remember the woman who would go out to eat lunch with her friends and thoroughly enjoy every minute of it. She felt no judgment, no doubt. A woman who looked forward to their annual shopping trip but now doesn’t know if she can physically handle the trip.

You see a woman able to work part-time who feels lucky she is able to do that.

I see a woman who has no choice. A woman who struggles to get through even a part-time schedule. A woman who desperately wants and needs to work full-time. This woman spends her days off recovering from the days worked. She’s not at home sleeping in while everyone is working, she’s up at 6 a.m. because pain won’t let her sleep in. She’s not relaxing enjoying the weather or catching up on housework or going shopping. She is in bed, exhausted but unable to sleep. Switching positions frequently, yearning to get comfortable. Heating pads, icy hot patches and medications get her through the day. Her mind races with things she wants to do, things she needs to do but her body struggles to even make it through a shower.

This woman would give anything to feel normal. She now views being able to work full-time a gift, an opportunity she used to complain about. She spends a lot of her days off in doctors’ offices and hospitals, hours of waiting and wondering, X-rays, needles, more bills adding to the financial burden created by not being able to work full-time. She sits on the sidelines as life passes by, desperately wanting to jump in, to participate, to live.

I see a shell of the woman I used to be. I see her struggle to get out of bed every day, not because she’s lazy or it’s too early, but because she’s in pain and her body doesn’t always cooperate. I see her take a handful of medicine every morning and night to function. I see her limp from pain and weakness. I see the bruises from stumbling and bumping into things. I see her have to rest after simply taking a shower. I see her husband walk beside her with his arm stretched out ready to steady her or catch her if she gets too weak.

I see all of this through tears. Tears hidden from the world, tears held back to maintain the image of the person I want you to see. In chronic illness there is a saying that people think we pretend to be sick when in reality we are pretending to be well. We pretend as we desperately try to hold onto some part of normal life. We pretend to avoid the judgment, gossip, frustration and pain of having people you love not believe you. I miss the person I used to be. I miss the person I dreamed of becoming. And yes, I know “it could always be worse,” but please don’t minimize the impact and grief I feel from having a chronic illness to which there is no cure.

I’m not writing this for pity, attention, or sympathy. I’m writing this for awareness for invisible illness and the stigma surrounding it and also as an outlet to say the things I work so hard at hiding. Many of us are judged, questioned, doubted and even mocked every day, and sometimes it comes from those closest to us.

I rarely have good days anymore. I see the life I had slipping farther and farther away. I struggle every day to deal with this. So please, the next time you look at me pretending, remember that the person you see is the me I want you to see.

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Thinkstock photo via Rohappy.


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