For those of us living with a chronic illness, we can go through many emotions in our day-to-day lives. The 5 stages of grief (denial, anger, bargaining, depression and acceptance) also plays a big part in our lives because, so often, our chronic illness causes such a huge loss.
The 5 stages of grief was identified by Dr. Elisabeth Kübler-Ross in her book, “On Death and Dying,” that was published in 1969. The Wikipedia page for the Kübler-Ross Model, which is what the 5 stages of grief is also known as, has the following:
Kübler-Ross originally applied these stages to people suffering from terminal illness, later to any form of catastrophic personal loss (job, income, freedom). This may also include significant life events such as the death of a loved one, divorce, drug addiction, the onset of a disease or chronic illness, an infertility diagnosis, as well many tragedies and disasters.
Kübler-Ross claimed these steps do not necessarily come in the order noted above, nor are all steps experienced by all patients, though she stated a person will always experience at least two. Often, people will experience several stages in a “roller coaster” effect—switching between two or more stages, returning to one or more several times before working through it.
It’s been 10 years since I first became sick at work. I thought I would go through the 5 stages and see what this old brain can remember.
I’m going to guess it’s the rare person who doesn’t go through this phase. At the beginning, there was a lot of blood tests and the I-don’t-know shrugging of shoulders by the doctors. I saw a neurologist because I kept saying I had these shooting pains that would turn into a headache and my doctor wanted to make sure I didn’t have a brain tumour. I also saw an internist who did a lot of the same blood work over again (vampires had nothing on these guys at times), did a few extra tests, but still could not come up with why I was sick. The internist is the one who called me an enigma.
But, hope still sprang eternal for me for the first year and a half. There had to have been a discussion about me at work. I tried a couple of times to go back to work and I didn’t even last the morning. I was off for another week or so and I tried going back half-days, starting in the afternoon. Sort of worked OK at the beginning. I was still really tired and it started getting to be too much for me and my team leader told me to stay home while the doctors figure out what is wrong with me. After two months I was on short-term disability.
I was able to get into a regular sleep routine after being home for a couple of months. I was putting less stress on my body with not going to work. I was back to waking up at my normal time of 6:00 am and did my morning routine, though definitely a more relaxed version. I still had most of my symptoms but I always thought that the doctors would figure out what was going on. That optimistic, hope springs eternal thinking. Chronic fatigue syndrome was ruled out by my doctor at the time, though I sometimes wonder if that played a part. I’ve read some blogs by people with CFS and vertigo and balance issues are a problem for some of them.
However, a year and a half after I first got sick, my money started running out. I sold a few things to help pay the rent and cashed in my retirement savings that I had started to build up but that fall I had to move out of my apartment and rent a room in someone’s home.
DENIAL STAGE DEFINITELY OVER!
This is one area where some days I’m OK. Then something happens. I look at the situation that I’m living in (a rooming house, a quiet one where we pretty much get along, but, who grows up thinking they’ll be living in a rooming house), other people around me in bad moods, the weather changes or I get a cold that affects my ears and balance and I’m stuck in bed. The ENT doctor can’t help me, just find a “quality of life” I’m told. I see people seeming to lead “normal” and I’m not one of them.
I”M NOT ONE OF THEM!
I think anger and acceptance are working hand-in-hand as far as I’m concerned. I’m accepting that this will be with me the rest of my life. However, since it seems there’s nothing that can be done to help me, anger rears its ugly head a lot more often, stressing me out at the same time.
DEFINITELY NOT OVER IT, PROBABLY NEVER WILL.
When they say there are some stages you don’t go through, I think this is mine. I don’t remember any bargaining. I think all that I kept thinking of were the things I was going to do before I got sick. I had gone from being a temporary employee to permanent one the year before I got sick and I had started looking into Continuing Education classes at one of the universities. I was thinking of things like yoga and joining a gym. I was making plans. And I was going to keep those plans going when I got better.
DON’T THINK IT EVER REALLY PLAYED A PART WITH ME.
I suffer from S.A.D., seasonal affective disorder. Depending on how my winter is going I have somewhere between a mild case to maybe medium. The anniversary of me getting sick falling right in the middle of winter doesn’t help either. In fact, when February comes around, I know it’s sometimes worse. Once, I’m over the hurdle of February 15th, things start to get better. However, I don’t feel like I’ve been depressed. What I have been diagnosed with is situational depression so, sometimes I will feel a bit blue at other times of the year depending on the situation.
However, there have been two times over the years where, mentally, things were really bad. The first time was a couple of months before I had to move out of my apartment which is about late summer 2001. Reality was kicking in and the denial stage was coming to an end. I was lying in bed thinking how life had turned out and it wasn’t pretty. No diagnosis, no help, running out of money, running out of options.
I was lying on my bed trying to come up with options, but couldn’t. And then it happened. I thought the best thing to do was to just die. For a few seconds it seemed the one and only option. But, survivor mode kicked in and I figuratively scared myself to death. I started thinking “NO! DON’T THINK THAT! THAT’S NOT THE ANSWER!” I don’t think I have ever been so scared in all my life because, not only had the thought had come so quickly, there was a sad calm that overcame me. Obviously, I’m happy that I didn’t go that route. But, it gave me a very quick glimpse into a dark abyss that I hope to never fall into again.
Then 2008 came around. The one big thing that happened to me personally was that I was deemed a person with a disability. More money, less stress, a few more options.
A couple of other things happened that had nothing to do with me. Heath Ledger died in January of 2008 and the movie The Dark Knight came out that summer. I saw the movie when it came out on dvd , really enjoyed it and even bought my own copy of the movie. And then the winter of 2009 started.
I felt so bad for a couple of months. It took writing things out to figure out what was going on. The first was, I finally got on disability. While it was what I wanted, it put to rest the chance of me getting back to a “normal” life and I had to acknowledge that I now have the label of disabled.
The other thing that happened was that everyone started talking about Heath Ledger getting an oscar nomination and perhaps posthumously winning the award for playing the Joker as well as all the awards he had already won. As I’ve already said, winter is the time when S.A.D. will kick in. That year, however, it was the worst that had ever happened to me. I realized it was because all these stories were coming out (and acting as triggers to thinking and over thinking) about a young man who had died, leaving behind a little girl. And that was when his death started affecting me. It seemed it was always in the news. How young he was, what he had accomplished, what would have been in his future.
And that is what got to me because I started thinking about what I was now missing in my life, what plans I had been making and what now was not going to happen. What should have been a more relaxing time had become an exceptionally sad and stressful time because sometimes all you can do is think. And, although they were innocent entertainment stories at the beginning, once the awards started rolling in for Heath Ledger, there were stories coming out about how sad it was for the people who worked on The Dark Knight to accept the awards. Adding to it, it was the middle of winter and I was not getting out of the house that much. That never helps.
But, as the saying goes, this too shall pass. And it did. The last of the awards shows finally came and went as did the entertainment stories. The days were getting longer and brighter. I had different things I did as coping tools. The snow started melting and my mood started improving. But, I must admit it has left me with questions about what will happen in the future. I am lucky that I have people who I live with that I could talk to and hang out with. They are going through their own health issues and we have that bond that wouldn’t have happened except for serendipity. One day we won’t be living with each other that scares me. While I miss being on my own, I’ve really become used to living with these people and our support system. I’ve lived with some of these people from 5 to almost 8 years. This is also the one place where I have stayed the longest. We have developed a support system for each other that we normally would not have as some of the people are also going through their own health problems.
WILL CONTINUALLY HAVE TO BE ON ALERT!
Again, I think this works hand-in-hand with the anger stage with me. At some point, it became clear that unless something a miracle happened, I was stuck with whatever was going on with me for the rest of my life. I finally got a diagnosis but, having a diagnosis doesn’t make things easier. Did finally get me on disability though, which has made life less stressful.
Well, if you have made it this far, congratulations. I think this is the longest post I’ve done so far with over 2,000 words. I was thinking about splitting it up into two posts but decided it would be better for the 5 stages to be in one. This will, I hope , also serve as a guideline as to where I am in the different stages of grief and as something I can use as a comparison years down the road. You never know what is around the corner, what may happen and how it will affect the different stages.
Writing this out has brought back memories, some good, some still uncomfortable to acknowledge and some bad, but they are mine and they are part of what now makes me, me.