This is what I hear most from sickle cell patients at our support group meetings. How do you deal with frustrating people who don’t understand what we go through?
I just answered this question on Facebook here’s my answer “I have a lot of experience with this.
My family used to ask unreasonable things of me.
Put demands on me. It’s like don’t you understand this is stressing me out and making me sicker? I finally snapped one day. I choose me. If my own family can’t understand who would? I make myself happy and only do whats good for my health. It took decades to get here, but I don’t feel guilty saying no. I’m not making them happy. When I made them happy it was a temporary happiness until they demanded the next ” favor”. Each time I became more miserable and sicker. We more than anyone know life is short. You need to be happy and let the guilt trip they’re trying to give you go. Clearly they have an agenda, that doesn’t have your best interest at heart.”
This is how I got to that conclusion with my own mother. First of all I’m not suggesting you stop talking to your family. I’m telling you very honestly my story. I am a yogi I meditate I’m peaceful. I did what I had to because I don’t think there is a word in our vocabulary for how stressed out I was or the level of frustration I felt. Please understand this is my life and after trying everything else. I felt I had no choice and I felt very guilty for a long time.
I was miserable. I was in a bad place for a long time. I had a bad marriage. A dominating overly persistent mother, a hostile angry Father. I have sickle cell and I was very sick. I would tell everyone how I felt my husband, my mother, everyone. I’m not the shy girl. I’m the one that opens her mouth and says what’s on her mind. The problem was no one was listening to what I said. I was stressed out. In pain all the time not sleeping. Waking up every night at 3:30 am. Everyone in my life was selfish and very narcissistic. That’s being nice.
My mother asked me to do things that were important to her and not important to me. Drive to my brothers 1-yr old’s birthday party out-of-state, or to drive with my two kids who just learned to drive ,( but not on the interstate) to North Carolina from Florida for spring break. Remember I have sickle cell, no one can drive but me. I did these things to be a good daughter, but they were making me sicker. They were stressing me out, making my life more difficult.
When my Mother visited me all she wanted to do was shop. I had wrist surgery and even though I begged her not to come she came to “help” me. All that happened was I ended up waiting on her. Can you get me some water? Can you? Let’s go to Macy’s, etc.. I had to tell her I’m going home I need to take a pain pill. I would say take my car and go wherever you want. My mother hates to drive, she can drive, she just doesn’t “in a strange city”. The only help I got was putting my hair in a ponytail. Remember I’m driving her around town with one arm, because my whole arm and wrist are in a brace and a sling after surgery. It was crazy.
I thought I could be a good daughter. I could make her happy. I kept trying. I tried to have more patience. To be understanding. You can’t make it work if you’re the only one trying. I can’t speak for my Mother, but I think she thought it was her right. I’m an only child. I have step-brothers and sisters. I don’t think of them as step. We grew up together, but my mother only put all this pressure on me. Not them. People think when you’re sick you’re weak in every area of your life. That’s not true– we are stronger than everyone else. We are tougher. We’ve been through more. We’re not weaklings!
To say my Mom’ s not maternal is an understatement. She thinks she is, but she’s not. After talking and not talking on and off for 10 years. I could not handle her persistence. After driving to North Carolina I stopped trying to make her happy. Because everything I did. Brought her temporary happiness until the next demand. North Carolina was dangerous. I realized that with my family in the car. I got sick driving home. I drove all the way home without being hospitalized, but recognized the pattern. Every time I did one of these request, or she visited. I ended up hospitalized. My own mother could not understand my illness or limitations. If she understood it she didn’t care about my health. I felt tremendous guilt from people in my life. Why can’t you forgive your mother? Why can’t my mother understand she’s asking too much?
I started saying no to these demands. They were no longer request. When I said no. She would call me 10-12 times a day. Are you coming to Ma’s party? No! Are you coming to Ma’s party? No! What part of no don’t you understand I would think. It got so bad I would not answer the phone. She then left long rambling messages on my answering machine I never listened to. I heard it was her and deleted it. She was stressing me out and making me sicker. Then my step father would call and curse me out. He never knew my side of the situation or heard what was happening. He didn’t care. There’s so much she didn’t tell him, honestly I was not in a rational, place to have the patience to explain it.
I asked my mother to stop calling me after 11pm. I wasn’t sleeping and would go to bed at 9pm, because I was exhausted. At 11:01pm my phone would ring waking me up. I turned all my ringers off, then later I’d forget to turn them back on. Finally the bad marriage the sickle cell pain, the lack of sleep, everything was just I too much for me to handle. I was beyond frustrated.
What do you do when you tell people what you need and someone can’t hear it? I had two choices. Continue and be miserable, or be happy and find peace. I CHOOSE ME! I choose a small piece of happiness in a miserable life. I couldn’t control my illness, my mother or my husband. I could choose to have a small part of my life to be happy. I gave my mother one last chance she didn’t change and could not hear it. I even wrote letters to her. I figured if she could not hear me talking she could read it and understand, but she said the letters were disrespectful.
I didn’t think it was disrespectful. Truthfully, the letters were brutally honest. They we’re not sugar coated, but it was the honest truth. I was too stressed out for it to be nice, but she could not hear nice. if you don’t want to finally hear the truth how do you hear the truth? You don’t. So I walked away. I never explained to my kids, or my in laws or anyone else why I did that. I really didn’t know why I did it. I was vilified by everyone. I was cold and uncaring, I was a bitch etc..
To be honest I didn’t fully understand why until I went to therapy. I instinctively knew I needed to walk away. I always follow my instincts, they’re always right. I knew I deserved not to be harassed. No one deserves that. No one in my life heard me, despite me speaking up. It was a survival instinct fight or flight.
I was happier, not as stressed, and not hospitalized as much I realized. One area of my life finally improved at a severe cost. I was and am willing to live with those consequences. It took a lot of therapy to get here. We went to marriage counseling and worked on our marriage. I’m well rounded. I’ve always been practicable and sensible. I don’t feel guilty anymore. I feel happiness and at peace with my choices. Everyone thinks I’m cold and that’s my fault. I really don’t care what anyone thinks of me. I’m not trying to please anyone but myself. I’m not explaining my choices. Nor do I judge other peoples choices because you do not know someone’s problems or how stressed they are.
My daughter thought I felt family was disposable because of this. My mother wasn’t disposable. She was responsible for a lot of unnecessary drama and stress in my life. That made my illness worst and all those phone calls when I would not do what she wanted stressed me out. I don’t know why she couldn’t understand that. I don’t know why she, the healthy person could not come to Florida for spring break or what was going on in her mind. I knew she loved me in a way that was detrimental to my health despite me telling her it was too much. She could not hear it. For me her inability to hear it was so painful. If someone really loves you, why can’t they hear your truth? Either they don’t care, or they have an agenda that’s more important than your truth.
Truthfully it’s like Oprah says. “When someone shows you who they are believe them” I believe them because of their actions now. If you show me you don’t care about me now after years of therapy. I. Ok with it. I don’t want that kind of person causing drama in my life. My life is happily a drama free zone. I then thank them. I’m not holding onto anger. Anger is like drinking poison and expecting the other person to die. What would you have done if you were me? Could you, would you walk away?
Thank you for posting “How to deal with frustrating people”. I totally agree with the decision to cut off any body or thing that causes more stress. What a lot of people don’t understand is that sickle cell anemia is way more than pain. It’s mentally, physically and emotional. We deal with alot more than pain. We’re still learning about ourselves and Sickle Cell. I have cut alot of stress causing factors off and at first I felt guilty but my body and mind felt a huge relief.Thank you again for sharing our story.
I lived with my sister for sometime,but I lived alone before that,once I fell really ill and could not get to the phone or eventually the door when someone finally wondered why they had not seen me.The door had to be broken needless to say my parents freaked out no more living alone unless you get a flatmate.While looking for one I moved in with my sister and her family.I fell ill more often but could not pinpoint the reason.Anyway I found a flatmate and moved out, my crisis reduced,but a few years later I had to stay with her again and I realised why it was I fell ill more often.It was all the little chores I had to do to help her out round the house,so I stopped and did stuff at the pace I usually did them at my place.If I felt a little off I sat it out or slept or listened to music,no matter what needed doing till I felt I was ready.She wash,t happy and we had a huge fight I told her all those little things added up and made me ill.I told her I understood she could not do it all alone but she had two grown up strapping teenagers who she needed to ensure got off their lazy behinds and helped.I informed her that if an instance ever came up again where I might need to stay with her I would not be taking it unless she understood it was my health then all others could follow.Selfish I don,t think so it had come to that point .