Why do People with Chronic Illness/Chronic Pain Experience Guilt?
Many readers who may not have a personal connection to Chronic Illness may not realize just how much guilt a chronically ill person deals with daily. Many factors give us feelings of guilt. It basically boils down to several things, the financial stress that illness and pain management brings, not being able to work and earn, and losing the ability to do the activities once enjoyed. Unfortunately and commonly a person may not know if plans made will be kept until they start getting ready. It’s kind of like Migraines, you never know when it will strike, but when it does you’re out for the day or days. Your promises of trips and activities become empty words. People know they can’t count on you, and you can’t even count on yourself because who knows when the flare-up will come, how debilitating it will be, or how long it will last. Chronic Illness and Chronic Pain is exhausting. In order to get things done around the house, we do chores in spurts. Often not completing tasks before the family comes home. So yes, many who suffer from chronic pain have a lot of guilt. People with Chronic Pain feel like a burden. The guilt that we can’t contribute financially to the house, guilt that our medical bills are so high, guilt that we have to take so many prescriptions, guilt that if we choose to manage our pain “naturally” it’s even more expensive, guilt that we have to lay around all-day because our bodies hurt to the point that we feel like we have the flu, guilt that the pain is so bad that we can’t take the kids shopping, or to fun events, guilt that the house is a mess, guilt that the family has to make their own food, guilt that the dog doesn’t get walked very often. Guilt, guilt, and more guilt. So how does one deal with all of this?
Accepting Your Chronic Illness and Educating Others
I’ll speak from my personal experiences. Until I accepted my diagnosis of Ehlers Danlos Syndrome I thought I was lazy, whinny, and needed to toughen up. I was pushing past the pain trying to stay active and fit, not realizing I was causing my body more damage. First, it was the neck fusion, then the lower back fusion, then shoulder surgery, and so on. I had to find out what was going on and how to stop it. Little did I know there’s no stopping it. There’s no cure for Ehlers Danlos Syndrome, only managing it. By accepting that I wouldn’t be able to safely do martial arts, kickboxing, boxing, running, and many of the physical activities that I enjoyed, was extremely difficult to accept. Telling my young children who were under ten yrs old, that we couldn’t go and enjoy the things I was pushing myself to do with them anymore had me crying myself to sleep many nights. I wish now that I had accepted my diagnosis and worked within my new limitations sooner, it may have prevented more surgeries. We try almost everything hoping for a cure when sometimes there just isn’t one, and there’s nothing wrong with that.
Realize There is NOTHING for You to Feel Guilty About.
I actually just learned just last week, what guilt and shame are about. I learned that guilt is when a person feels bad for the behavior, while shame feels bad about the “self“. Guilt is related to an action a person makes, a decision a person makes, while shame is all about the person, it’s an internal feeling. Did you choose to have chronic pain or a chronic illness that leaves you unable to do the things you once did? Do you choose to have an illness or chronic pain that requires you to go to doctors and specialists for medications and treatments? Did you choose to be unable to work? Of course not. Since the diagnosis and illness are NOT a choice there is absolutely NOTHING for you or me to feel guilty or shameful about. It’s just who we are and what we are given in this life. For example, look into people who have changed history by invention or policy. Often times this comes about when the person is going through a difficulty or illness that has no answers. Adversity is the best catalyst for inventions. Without recognizing there is a need, things wouldn’t change. A great example is the movie Breathe. It’s about a man who becomes sick and needs to live in an Iron Lung. He is so determined to have a better life for himself and others suffering from the same illness, that he literally changes history. It’s a great movie and very inspiring. So stop feeling guilty about what you can’t do and start looking at what you can do, try something new. If I were still able to do the activities I once did, I wouldn’t try anything new. Now, because I can’t I am always looking for new activities to keep myself busy. I’ve tried watercolor art classes through an app called MeetUp, I’ve tried Stotts Pilates, Yin Yoga, Qi-Gong, and even learned a new language! I never had the time to do any of these things before, I was too busy in the gym or working. Now, I read more, I learn whatever catches my interest. Sure it’s a trade, being a one-income family, but now I am even looking into being an online virtual assistant and becoming a secret shopper. The best work from home opportunity I have found if it’s physically possible is being a dog sitter. I joined Rover several years ago and have had a lot of fun and was so busy I had to stop accepting clients. Just know this, it’s not the end of the world, it’s time to think outside of the box and be creative. Stay busy, volunteer if you can, just do something. Never give up, keep looking for solutions and relief. Having a purpose that has nothing to do with visiting the doctor or dealing with chronic pain or chronic illness is the best way to stay positive and enjoy life.
That saying, “It could always be worse”, is true but isn’t used to reduce what a person is experiencing. Accepting that your body needs to rest more than usual, and taking the time to rest is important. Remember, your body is working hard so give it a break. Instead of jogging, try to walk, or go to the gym and see which cardio machine you can use without increasing the pain. Sometimes I can’t do any cardio and need to do an easy online video. I will often slow down the video so I can have more time to transition from pose to pose. This also prevents me from moving too fast and overextending. I figured this out by going into the little wheel looking thingy in the lower corner of the video, it will let you chose your playback speed. I just chose the one above the “normal” option and it works great. Give it a try, with your doctor’s permission of course.
Educate yourself and those around you, sometimes that includes your medical team.
Research is helpful in keeping a positive outlook on your current situation. It proves to yourself and those around you that you’re not being lazy or making shit up. The diagnosis is real and complicated. One day I can spend the day out and about, the next day I may be unable able to get out of bed to make breakfast, and that’s okay. This for me was and still is the most difficult thing to grasp. I still catch crap from people around me when they see me doing something active one day but unable to keep my plans the next. The only way I have found to help people understand is to educate them about my condition. I will send links, articles, and so on. I often will need to do this with new Physical therapists and other doctors so they can properly treat me and others like me.
Love Your Fascia and Love Yourself
I didn’t even know what this was until a few months ago. No medical person or Physical Therapist ever mentioned it to me. I learned about Fascia from a Stott’s Pilates Master Instructor who is also a Fascia Release Therapist. If you ever come across a person like this and can afford to have sessions with them, it is worth it. She helped me tremendously. She did more for me during the 3-4 hours I spent with her than any of the Physical Therapists I’ve seen over the 40 years I’ve dealt with this. I really wish medical insurance would cover this type of thing because of how incredibly beneficial it is. If you cannot find someone like her, please do research on Fascia Release, especially if you’re like me and have Ehlers Danlos Syndrome.
Do not ever think that your illness or pain has anything to do with being punished. This is just what life is and that’s that. It’s easier to accept it and enjoy life and not lay around feeling like life is a punishment. Not every day is happy, some days are more difficult and exhausting than others, but so what. That’s what makes a person resilient and empathetic. Using a lot of modalities to overcome low moods and fatigue are important. It could be using medications for pain or depression, exercises that are approved by your doctor, meditation to calm the mind and body, tapping/ EFT is one of my favorite things to do. The best thing about the age we live in is there’s an app for all of this. I use an app called The Tapping Solution by Nick and Jessica Ortner, a brother and sister team who created a great app with a wide variety of topics. There are dozens of meditation and exercise apps that are free to use. Find something you like and give it a try. If you don’t like it, uninstall and try something else until you find what works for you. Be sure to tell your medical team and doctors of what you are doing so they are aware and always ask them BEFORE starting anything new. Ask if it’s a good idea for you to be doing whatever it is you want to start doing. I find that when I ask first it prevents more injury, and my doctors treat me better when they know I am trying to improve and not just lying around taking meds all day.
I hope you found this helpful and encouraged to try something new. Let me know in the comments what you like best or if you tried something you’d recommend. We are all here to learn-share-repeat.
Take care of yourself and never give up!