by Alisa Abrams- Oestreicher
I would answer the phone and hear my moms voice on the other end.” How are you feeling today?”. I’m okay. “You sure?” Yes, I am good. I had become so disconnected from the question that my answer was practically pre-programmed. The truth was, I felt like crap, but I got tired of hearing myself mention it and I also thought people got tired of hearing me say it. It became easier to simply lie.
Being sick with a chronic invisible illness we truly start to live in a world where we are afraid to share what we really feel because we worry if we tell the truth we will become more detached to the people we love most. Our lives can become very fear based. Fear of being sick, fear of sharing that we are sick, fear of being disappointed, fear of not being understood. Fear of never being able to be free from both the physical effects of the illness and fear of truly connecting with people as our honest and authentic selves.
We assume things like we are a burden, people won’t understand, people cant understand. These assumptions can sometimes only deepen the pain and create more distance in relationships with the ones we love because we feel completely detached. It is a vicious cycle of not being able to express needs and anticipating rejection. These assumptions about others often create a large distance between the people who love us the most.
We can’t control that the people who love us may be quick to offer solutions. It is what they think is best to do and it is what they think they are doing to help us. I learned that most of the time, the actions that caused me to close up were things that were really meant to be helpful, but I was having a hard time simply expressing what I needed.
In order to heal from our sickness it is essential we have a strong support system and sometimes we need to take some responsibility in creating that system. It took me a very long time to come to that awareness and take personal responsibility for getting the love I wanted and needed.
Here are some steps that I practiced to make sure I was getting the love I wanted and needed even though I was chronically ill:
1. Share with the people whom you love the most how you are feeling: Feel the fear and do it anyway
This is not always easy to do. It is quite often, scary to do. We fear that people will not understand us, will judge us for complaining, we worry that we will turn people away by telling them how sick we are, and we feel like a burden. The truth is, the people closest to us are here to support us along our journey in life. They are here to help us feel safe and secure. The one way to create this connection with those people is to share ourselves with them. It is to be transparent about what life is like for us, without fearing rejection or dismissal. Sure it will be hard at first, but its worth a try. At the very least, you will know what you are getting into. You will be able to see if someone is willing to share themselves with you as well. We are all struggling with something even if we all do not have chronic illnesses. Your partner or friend may be struggling with difficulties at work, or problems with their own family. Just share yourself and be willing to listen to them share as well. Even if we are connecting about different pain and different struggles, its still connection. Be willing to show yourself and be willing to be present for the other person when its their time to share. If talking about it makes you uneasy, keep a journal for yourself. Sometimes we are unable to even know how we feel, especially if we are plagued with neurological and psychological symptoms from our illness. We often don’t understand what we are feeling and therefore its very impossible to even begin to share with others. Keeping a journal can be helpful for ourselves to hash out our own fears and frustrations. If you are having trouble talking about whats happening, you can invite your loved ones to read from it. Maybe then it can give them some insight to whats really happening for you living with chronic illness.
- Be clear on what you want from the people around you: Very clear
One of the most valuable lessons I have learned through my journey is that people are not mind readers. I always was so frustrated that people would not do the things or be the person I wanted them to be. With every disappointment came more validation in my mind that my sickness would prevent me from having the life that I wanted. It became a self fulfilling prophecy. Anticipating rejection, I was turning people off and away from me. Get clear on what you want from people. Write it down. You can’t be mad at the world for not responding to you in a positive way unless you get clear with yourself on what type of support you are looking for. Once you know what you want, politely ask for it and explain why its so important for you to have it. If you find that when you share with someone you love how you feel and they are quick to say things like “ Go take a walk or don’t stress over it” understand that they believe that this is the best way they can support you. By fixing you and offering their advice. Be clear with them that although you appreciate the advice, that you are simply looking to be listened to. That can do wonders for any relationship in reducing your loved ones constant thoughts of how they can better help you and your own thoughts of feeling dismissed and misunderstood. Also be mindful that a relationship involves two people and that those people have needs to. Don’t get mixed up in your own sickness and forget that there is another person whose needs should be considered equally.
3.When people show you what they are capable of or not capable of, believe them.
Like any dysfunction in relationships and the bad habits of being with someone with the hopes of changing them; realize that this will never happen. Ever. As cliche as it sounds, you can not change people. People have to change for themselves. You can help facilitate that change by treating them with compassion in spite of how they disappoint you, or trying to understand their point of view but you ultimately can not change them. If someone is treating you unkindly, or without compassion, you will more than likely not change that. It is something you will have to ask yourself if you are willing to accept in your life. If you are willing to sacrifice being supported and loved by your partner, its probably a good idea for you to do some work on figuring out your self worth and perceived value. Being sick doesn’t make you damaged. It doesn’t mean you don’t deserve to be treated with respect. It doesn’t mean people wont love you. There will in fact be people who will love you not only in spite of your disease, but will love you more because of it. For every person that disappoints you, there is someone else waiting for the opportunity to get to know someone as wonderful as you.
- Take Nothing Personal
This was huge for me. Take nothing personal. The way a person treats you or reacts to you is not at all personal. They have their own things going on in their heads and in their lives. Be respectful of that. If someone talks a certain way to us, or is disappointing us its always helpful to not take it personal. A more loving approach is to simply check in with them and see whats underneath it all. If someone is unkind to you, it has everything to do with them and really nothing to do with you. Sometimes people are struggling with their own fears and feelings as well and they need a little help and encouragement along the way. Sometimes its good to remember that everyone is having their own unique experience and simply try to show them the same amount of compassion you would like them to show you. When you do that, you may naturally help assist them in being more compassionate themselves by example.
- It is better to be alone than be with someone who does not support you or makes you feel alone
When you are sick, you often feel damaged and worthless. I know I did. I often worried about my future and who would ever be able to love someone as sick as me. I wondered who would want to stay home on a Friday night when everyone else was out having lots of fun. I didn’t think that anyone would make that sacrifice for me. The truth is, some people won’t and thats completely okay. Ask yourself how much that matters to you. If it matters a lot that you have someone by your side most of the time, let go of that person that always lets you down. It is better to be alone than with someone that doesn’t help foster a supportive environment for you. There will be more fish in the sea. The person who isn’t treating you with compassion is worth getting rid of. Your health is of primary priority. Living in a stressful environment will only make your health worse. The goal with all chronically ill patients should be minimizing stress at all times.
6. Remember you are more than your illness
There were times I was so sick that I had seemed to have forgotten my real value and self worth. Keep in mind that you are not just a sick and wounded person. Yes, you have tremendous hardships physically at times, but you are more than your disease. Within you, you are still the loving, capable, wonderful person that you were before you had or even during your lyme disease. That counts for something. Reminding yourself that you are still a perfect person in spite of that goes a long way. Healing for me came from numerous sources but believing in my ability to still accomplish all I wanted to kept me going. It kept me mindful that I had purpose. Don’t forget that you have that purpose. One day, these hardships will hopefully be just memories to you. Things that for me, although very painful and difficult, also helped me gain purpose in my life and perspective. I had often thought who would I have been if this did not consume my life for all these years and I realized that yes, there is no doubt that i would have been a much different person. But, I cant be sure that I would have been a better person. Believe that through our greatest trials and struggles that there is something beautiful on the other side of it.
Life is a heck of a journey for all of us but you are still here for a reason fighting. There is superhero in all of us and no beautiful story is complete without some bumps and turns along the way. Be grateful that in life you have people to support you and if you don’t feel that support, go out and find it. There are tons of people who want to help you along the way.