You have to take care of You

Often, with a chronic illness, we find ourselves in a bit of a dilemma. You may have a family, home, job, animal, or some other aspect of your life that is dependent on you. Friends, loved ones, fellow employees, classmates, students, etc. are around you and you find yourself in an odd place with how you feel, what you feel you need to do, and what you should do.

Common feelings and emotions with chronic illness are:

• GUILT – We feel as if we are a burden or a problem. No one likes to hear someone who only complains and often that is all we can do. Not that it’s intentional, just being uncomfortable is at the forefront of our minds. So we feel guilty for slowing others down, for needing rides, for costing money, for not being able to help, for not being as strong or charismatic as others or for any other number of reasons.
• JEALOUSY – We wish we could do what others can do. Eat the foods they eat, go hiking, enjoying family events, going out to party or dance, being active and carefree. We find ourselves jealous of those who can do what we wish we can.
• ANGER – Whether it is from jealousy or the way a person treats us, anger can often rear its head. This is further fueled by our anger and frustration at ourselves, our condition, medications and physicians that do not seem to help, people that treat us poorly, or anything that just feels unfair or wrong.
• SADNESS – We can’t help the sad and depressed feelings that come from wanting to feel better, from being tired of being tired, sick and in pain, at wanting a life we can’t have. Sadness can stem from guilt and jealousy or just a feeling of hopelessness and loss of control our situation.
• FEAR – How long will we be like this? Will it get better or worse? What will happen to our jobs, relationships, bodies, mental health? What is the medication doing to us? Fear of the unknown and how our lives will progress.
• HOPELESSNESS –  This feeling of just being at the end of your rope and worn out and sad and just fed up.

Now, these feelings are normal. You can’t just turn them on or off. You can learn how to cope with them, you can force yourself to push through them, and you can try to better yourself to overcome them, but they will pop up from time to time and that is okay. Don’t let these feelings make you feel worse about yourself, about who you are.

So first and foremost, confront your feelings and ask yourself why you feel them and if it is worth it or justified. Is it your fault that you are sick? No. Is it your fault that you have changed? No. Does the change in you suck? Probably, at least at first. Is it the end of the world? No.

Listen, your conditions are not you, but they are a part of you. This is so important to understand and push into your skull and say all the time. Your life is not over because of them, at least not instantaneously. You need to enjoy what you can enjoy, embrace what you can embrace. And most importantly, you must take care of YOU before you can take care of anyone else.

Your medications, eating correctly, sleeping correctly, exercising or physical therapy if you are able, and cutting out toxic people. People can be cancerous, and you may need to remove them. High stress, anxiety, and depression will heighten pain, disturb eating and sleeping patterns, and slow healing. People who cause anxiety, depression, and stress do not need to be able to do this. Whether they are family, a significant other, a friend, a doctor, whatever position they hold in your life is not worth making your life harder. The initial break is always hard and will be a bit of a setback, but once the stress is gone, it is very much worth it.

I’m not saying give up on people, I’m saying not to let people who only use you, mentally and/or physically abuse you, or treat you badly be a significant part of your life. You do not need that. You have enough to deal with.

But do remember this key point: If you have someone who is an outlet, who is there for you and is your shoulder to cry on, make sure you return the favor. Call them on occasion just to talk or to see how they are doing. Make or buy a small gift to thank them. Appreciate those who are there for you. You may or may not know what their struggles are, but you should always show them that you are thankful that they are there for yours.

The hardest people to deal with is your spouse/partner/significant other. I was married over ten years and the last half of that was pretty rough. He was away for work a lot, leaving me and our young child home alone. With my bad health, this was often very difficult for me and sometimes even scary. I couldn’t safely take certain pain relievers, going to the emergency room wasn’t an option, and trips to the store and maintenance on the home were extremely taxing. On top of this, we had grown apart and he had begun to resent what I had become. That was when the verbal abuse began.

He would say things such as “You aren’t the person I fell in love with,” “You can’t be a very good mother/wife anymore,” “You’re broken,” “I’m not attracted to you anymore,” and would often blame me for his difficulties with sex, his mood swings, and his anger. When I found out I had Celiac Disease, he never acknowledged it, just cut me out of food decisions. For instance, he would come home with takeout from somewhere with food I couldn’t eat or would want dishes cooked that he knew I couldn’t have. He would complain about having to do repairs or yard work when he was home to the point he stopped doing them. I got the wonderful experience of crawling under a trailer in negative degree weather and fixing a broken water pipe (while the water stayed on or else it would freeze again) with a spinal condition and recovering from abdominal surgery.

He assumed that I never wanted to go off, have a drink or two, or do anything to cut loose because I was tired all the time. So he would do those things and never offer me time to myself or to be a designated driver so that I could have a once-in-a-great-while drink. He would come home from being on the road for a few weeks, dump his dirty clothes for me to clean and food stuff to put in the fridge and then take off to see friends or go do something.

It took me a little over a year from the time I realized that he was making me worse before I finally decided to leave. My husband was a person who had begun to joke about replacing me, and he joked about that a lot, to the point where neither of us were laughing anymore. He antagonized me and pushed my suicidal thoughts and depression. He berated me about taking pain medication but would always make sure I took my “happy pills” so he wouldn’t have to deal with my moods. It was toxic. And I got out. And it was terrifying. He had conditioned me that my scarring and health and age and son and inability to have more children meant no man would love me or want me. And I believe him. And he believed him. And he was wrong.

My son lives with him because I can’t work and I could barely take care of myself. They have a house and he now has a family with another woman. I am happy for them and I get to see my boy every summer and talk to him at least once a week (they live in another state). But I also stopped taking my medication. Partly because I have no insurance, but I also knew that the 12 prescriptions I took a day added to my weight issues, my lethargy, and my mood. I miss having break-through pain meds and sleeping and nausea are an issue I fight with, but I’m better. My partner, a wonderful man I met when I split with my ex, takes care of me. He makes sure I eat what I can have and is very supportive. He supports my writing and my crafting and the things I like to do. He has given me confidence and strength. On my own I have learned that I can be more than I thought I could be. I can’t be who I was before I was sick, but I can be something. I lost weight, eat smarter, and I am no longer suicidal or dangerously depressed. I have my moments, we all do, but it no longer consumes me. I am hoping to get state assistance to help me get by easier. If my son wanted to live with me now, I could (with the help of my partner) take care of him because I have begun to take care of me.

So the point of all of this is that you have to come first or you will never be in control. You have to take care of you if you want to take care of anyone else. You need to take care of you because you are the only person in the world that knows what you need, how you feel, and what you want in life. Take care of you and you will do so much better. You will feel better about who you are and that will help you find what you need to be stronger and happier in life.