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Working Through the Phases of Grief Over My Chronic Illness

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After my recent post on my blog where I briefly touched on this topic, I felt I wanted to go into more detail. This is an area I have studied lots over the past 10 years and have experienced through various experiences in my life. Some being death, alcoholism of a loved one and my illnesses.

I believe this process can be applied to any situation where you need to reach acceptance, and being diagnosed with chronic illness(es) is a big one. So many struggle through these five stages (denial, anger, bargaining, depression and acceptance) and put pressure on themselves to be instantly “OK” with what the future potentially brings. Well, as the future is not set in stone, neither will your grief be. Grief is not linear, nor is healing.

You may find you reach a great place of acceptance and no longer carry anger. However, a new diagnosis, a flare, a comment from a stranger can put you right back to the beginning. Yes you’ll be more aware of the process, but that doesn’t make it any easier. Being chronically sick can be like losing a loved one, except that loved one is you! You mourn your former self and the life you lived, plus the life you envisioned you’d have. You bargain with with “what if’s” and torment yourself further.

I was just 21 when I was diagnosed with ulcerative colitis but I had been suffering for two years prior to this. I had two years to begin adjusting to the diagnosis, yet I point blank denied what was happening to me. I carried on partying, not sleeping enough and I began blaming external issues for not excelling in my career, or finding it hard to get up in the morning. My attitude was awful and as I started to reach the anger stage, I spent a long time there. This affected my relationships and left me incredibly anxious and depressed.

For me, this stage is one I have always found hard to get through. I believe anger is often coupled with a lack of control. I was angry over my parents drinking, because there was absolutely nothing I could do to control it. I couldn’t move houses or hide from what was around me. Similarly with my diagnosis, I found myself faced with a situation I had zero control over. Eventually I learned that I could make informed choices, but only after fighting for my rights to those choices.

I also realized that by following a set of rules, I could ease both the stages of grief and anger, to realize acceptance wasn’t far. This set of rules I gratefully learned from Alateen. This set of rules is known as a prayer to many but I am not religious, so I adapt it to suit me.

“Grant me the serenity, to accept the things I cannot change, courage to change the things I can and the wisdom to know the difference.”

This for me has been key to my survival! I realized that all I could do was try to change what I could, be the best I can be as this person with chronic conditions and try to accept it that way… and move on. By dwelling on the fact that I could no longer be who I was before, nor would my future be as I had planned, I was only causing myself grief. By being angry at the lack of control I had over the situation, I was only hurting myself and if I only used my knowledge and strength to work on this, I could discover the new, better me. That’s courage through wisdom!

woman standing in kitchen

This is not to say that I don’t go through these stages in phases. Added diagnosis, flares and raised expectations are often what lead to my downfall. Depression is a stage that seems to hover over me like a cloud. It never truly goes away but some days are brighter than others. It can be distant on a sunny day but as the pain or situation reaches a climax, the grey rain clouds come over and empty themselves on my soul. I continue to grow and work through this stage. I bounce between depression and acceptance almost monthly.

I have also learned a valuable lesson and that is, that I can only rely on those who are consistent in my life. It’s hard because it can make your circle very small but it’s vital to coping and your mental well-being. Raised hopes and expectation will only lead to further heartache and it’s often not always family that will be your biggest support. Luckily my immediate family are amazing but I have zero help from extended family. My extended family are my support group members and spoonie friends.

woman lying on hospital bed giving thumbs up

Guilt is the other area that many who live with chronic illness face. We guilt ourselves over our parenting, our careers i.e. if we can or can’t work, our friendships and relationships. We then judge our worth based on this. We shouldn’t! Our illnesses do not have to define us negatively. Being sick has given me a greater sense of empathy, gratitude and the will to do right by others. I may well have continued on a selfish path but my illnesses have made me humble and giving.

Before I was sick I had a path planned for me and I’d do whatever I had to to get there. I was mad at others for my unhappiness and then my illness. I hated conforming to office life once I got there and never fit in. So it wasn’t all I’d hoped it would be. Yet now I have chosen to be a stay at home mum and run a local support group, online group, blog and support patients one to one. I now know I am worth so much more because my life is precious and not for conforming, blaming others or holding onto anger. I can do good in the world and that is just a fraction of my worth!

newspaper article about the author doing a lingerie photo shoot
A newspaper article about the lingerie photo shoot Shelley did to empower herself and model lingerie made for people with ostomy bags.

I soon realized after the birth of my children that I wanted to show them there is strength to be found through adversity. I’m not after some martyr story but to show them that by keeping good company, being kind, loved and empowering themselves with knowledge, that they too can be strong enough to both offer support and receive it if necessary. It is not weakness to ask for help, it is not attention seeking to educate others about your condition(s), it is not giving up if you embrace a bad day… it is following those rules and knowing what you can and can’t control or change.

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Originally published: May 1, 2017
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