The one major aspect that the doctors don't warn you about when you're diagnosed with a life changing illness, or disability is that you will grieve your health, past life, and what you wanted for your future every single day. You're grieving your own life. Who you were and wanted to be died, but some part of you is still here, slowly fading and just watching. It's absolute torture and it's so heavy to carry. For me, this one of the most lonely and devastating feelings and one of the worst aspects of being chronically ill. Somedays the grief is quiet and other days it screams and it's all my brain can focus on.
Most people can't even begin to imagine or comprehend what this is like. Most people don't even realize this is something that happens to a small percentage of the population.
There are five stages of grief: Denial, anger, bargaining, depression and acceptance. You don't always feel them in this order and you can experience multiple stages at the same time. Looking back, I can tell which stage I was in based on the choices I was making at the time. I'm a hot mess of emotions and the grief definitely hits harder some days than others, but it's always there.
The stages of grief look different for everyone. When I'm in denial, I convince myself that I can find some sort of job and fix my financials. That there will somehow be a magical job that pays cash, so that I don't lose my disability and insurance and will be flexible around my appointments and procedures. That I will somehow feel well enough to actually be able to show up and do something. I also like to convince myself that I'm well enough to go back to school and get my PHD if I just pace myself. I will look at different online schools and look at the class loads. Then I realize there's one year of 40 hour per week clinicals and reality hits that I'm not physically capable. Cue the depression.
-When I'm in this stage the best thing anyone can do to help me is just to listen. Encouraging me to pursue things that I realistically can't do because of my health is not helpful. This is actually very harmful because then I feel like I'm letting you down when reality hits and I don't follow through.
For me, anger and depression usually hit at the same time. You can even throw in a nice dose of anxiety to go with them. I'm frustrated to tears and too depressed to do anything. My anxiety over all of it makes me nauseous and have tension migraines. I force my way through the day just trying to hold it together. Xanax usually helps keep me from crying and getting too worked up. (I am not suggesting this as a method for anyone. I am lucky to have not formed an addiction to this medication and am able to treat as needed with it.) During this stage of grief, I do the bare minimum on everything because it's just all too much. I really suck during this stage and seem to get stuck here because it's hard to see past the harsh reality.
-When I'm in this stage, the best thing anyone can do is just give me something to look forward to, no matter how small. Meeting up for coffee, or lunch. Talking about an upcoming holiday, event, or trip.
Bargaining is a productive stage for me. I convince myself that if I eat healthy, workout, go for walks, keep up my appearance, and keep things very clean that somehow the universe will reward me with better health. Sometimes this lasts for months, but eventually anger and depression sneak back in.
-This is a tricky one for me because when I'm in this stage, people tend to think I'm doing and feeling better. I'm not. I'm desperately trying to convince myself that I am though. I think the best thing someone could do during this stage is just acknowledge that I'm trying but remind me not to overdo it.
Acceptance can go two ways for me. It can kick me back into the anger and depression, or I calmly float through life for a while until something knocks me back into another stage of grief. During acceptance I am usually more patient with myself and just try to find things to occupy my time. My mood may improve, and I might feel content for a while, but it usually doesn't last long.
-During acceptance the best thing someone can do is just be there with me. Don't push me, don't make suggestions, just listen and offer to hang out, or meet up. The best thing I can do is keep my mind busy.
I miss my old self and wonder what my life would be like if I were healthy. I miss waking up with a purpose. I had a successful business, a decent social life, goals, and a bright looking future. I'm angry and sad I had to give up the life that I wanted and worked so hard for.
Now I have never ending doctor appointments, procedures and surgeries, I feel like shit and have no energy, I have never ending debt, no social life, no purpose, and it seems there's no way out. I mourn the life and I could and should have had.
For the healthy people reading this, I know this is hard to understand because you've never had to grieve your own life, but for those of us who do, it's unimaginably painful. There is nothing you can do to help, or make it better. Just be supportive, be a good listener, and be patient. We have no idea what we are doing, or how we're supposed to just move forward.
I find a lot of good and relatable quotes and information on Pinterest. I'd like to share some below because I feel they are accurate descriptions of these emotions. Follow me on Instagram for more @chronicallyspeakingblog
"No one tells you that you will grieve when you become disabled or chronically ill. It's expected when a loved one dies, but you don't expect it when you experience chronic illness or disability. The process is the same. The feelings are the same. The only difference is that instead of a loved one dying, it's like you've died. Your life, your hopes, your dreams, your plans. Who you were and you wanted to be. Everything. All forever changed. You break your own heart over and over again because you have hope of a restored body and life. It's like you're dead but still alive. You're a ghost in your own fucking life. You are haunted by your old life, your former health, and everything you've lost." - Micky D.
"The thing about chronic illness is that there is daily grief. There's a daily sense of disappointment. Everyday there is something to miss. Everyday there is something you want to do that you can't. Everyday there is isolation and loneliness. Everyday there's a feeling of when is it going to end..." -Miranda Hart
"People don't often associate chronic illness with grief but the realization that life will never be what it was and the future is not what you thought it would be is a major loss." -Dr. Ingela Thune-Boyle
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