Grieving Your Old Life and Finding Your New Normal
If you are reading this and you are someone who is living with a chronic illness then I think no explanation is necessary about mourning the loss of your “old self.” It’s that thing that happens when we hit our lows and we reminisce about who we used to be or what we were able to do. Sometimes it’s even about mourning the loss of the person we hoped we would become.
This grieving for your old self can happen at various points throughout your life and it can last variable times. It can come after diagnosis, after a long bout of very severe disease activity, after a major surgery, or during big life changes that were caused by your health. It certainly has happened to me many times where I have mourned the loss of who I used to be or who I wanted to become.
Yearning for my "old life
A particular time that always comes to mind is the year leading up to my first surgery. I was so young and of course my peers had a completely different life than I had. I ended up having to quit school and quit all of the extracurricular activities that I loved so much. My life revolved around my illness and because I was so sick I was unable to do anything but lay in bed. I was on high doses of steroids and was losing so much blood in my bowel movements that it got to the point of needing blood transfusions.
For a whole year I was practically bed ridden and living in severe pain. I laid there day after day with high fevers, swollen joints, and terrible pain and blood loss in my bowels. My daily activities consisted of taking prednisone, taking my other oral medications, and doing nightly enemas. I took my temperature often and only got up to use the bathroom or during the few times that I would eat. When your world becomes just the 4 walls of the room you lay in over and over it becomes pretty isolating. I felt angry because it felt like my youth had been stolen from me. I started to yearn for my “old life” when I was able to go to school and see my friends and not have to live in a state of constant anxiety.
It wasn’t fair and I just kept questioning why me? What did I do to deserve this? Of course the answer to that was nothing, I didn’t do anything to deserve this; people don’t get sick as punishments and even though we know that we still find ourselves questioning why me?
Another time I found myself grieving for my “old self” was after the removal of my colon and rectum. As strange as it may sound, I was feeling loss over the organ that used to occupy my body but had to be removed. I even wrote a blog about it once. I wanted my old body back, one that didn’t have surgery scars or an ostomy bag. I wanted my old life back, the life I had before it had come to this point.
What I miss most
It seems just as I learn to accept things and overcome them I find myself in a new situation that leaves me mourning my “old life” or my “old self.” I tend to be hospitalized at least once a year, and my hospitalizations tend to be pretty lengthy. My longest was 6 months and I get lucky if they are under a few weeks. Every time I pick myself back up and go back to work or gain some sense of routine to my daily life and start feeling like things are falling into place again I seem to have a set back and then I feel loss all over again. I start missing the times when I could work, I miss the jobs that I used to be able to hold, I miss the athlete that I used to be, I miss having a social life, and so on.
A friend of mine recently mentioned how she was diagnosed as a kid and was feeling a sense of loss for the person she had envisioned becoming. I can certainly relate to that myself having been diagnosed as a kid, too. We have these ideas of who we want to be in our future and when our health derails that, it can feel pretty devastating.
Finding peace with a "new normal"
The whole point to this is that I want you to know that these feelings are completely normal and are actually quite common among patients who have chronic illnesses, especially if they are severe. A positive to this is that after going through those stages of grieving most patients are able to come to a place where they can accept their situation and make the most of it. They find their “new normal.” You think that you'll never get there, but it happens.
That time in life where I could never imagine life seeming normal again after my surgeries, now I hardly even think about the fact that I do not have a colon. It's normal, or at least it's my normal. I definitely do not like being sick but I have accepted it. I do my best to make adjustments in life that will give me my best life possible. I had to learn that I had to give up on certain dreams of mine but that it didn’t mean that I was doomed in life.
Acceptance is something that has to be worked on and it can be wavering. I find that once I get there I don’t always stay there. If I am facing another surgery, hospitalization, or diagnosis it seems that I have to work hard again to find my new “new normal” and go from there. There are still times that I am grieving my old life or the life I had hoped to have. I still get angry and wish that things were different at times. I do know that in the end everything will fall into place and I will be OK. It will be OK and sometimes I have to remind myself that often.
Have you experienced joint pain as a symptom of Crohns or UC?