Posted by: hockeygrl1 | February 19, 2011

Grieving for my health


I’ve been fortunate to have worked for companies that believed in developing their employees. Because of this, I had training in stress management and in personal development. I had even worked with a personal coach.

Part of our development training was talking about the grieving process. We had just had some layoffs and there could be more to come and they wanted to help us deal with the aftermath. I learned that you can grieve over anything. Including losing a job or losing your health; it’s not just for losing a loved one.

In the training I received, we discussed 7 stages; shock or disbelief, denial, bargaining, guilt, anger, depression and acceptance and hope. Not everyone spends the same amount of time in each stage or even goes through the stages in the same order. You can also go back and forth, moving ahead in the stages and then regressing. It is a very personal process and everyone is different.

Now even though I am very rational and educated, I didn’t realize this was what was happening to me at the time. I was dealing with a major change to my life and my whole life was upside down. I wasn’t thinking that I’m in shock. It really wasn’t until much later that I realized it and am able to dissect it. I think this is something hospitals should add to their folders to help people deal with a major illness as well as doctors being more upfront about the seriousness of the illness.

I don’t remember if my doctor told me how serious my lupus was. I really had no clue. I’ll say now that I was in shock. The doctor was talking about chemo and dialysis and I thought that’s some serious medication, but it still didn’t hit me. It didn’t sink in until months later.

I was grieving the loss of my life as I knew it. Here I was only 35 and in the hospital with tubes everywhere and nurses measuring how much food and water went in and out of me. I had lost my life, at least this was not the life I saw myself having. I had lost the ability to function like I used to at least with my body (there is some lupus fog to effect my mind).

So, here’s where my step one hit; shock or disbelief. I was stuck here for the longest time. I really believed that I was going back to work after I left the hospital. I was walking in a fog and thought it was happening to someone else, not to me. The beginning is all still very foggy to me. I don’t know if it’s because of the medications or because I was just that sick, but there are chunks of time missing. I know I was doing things. After all, the kids are still alive and they did go to school and dance. None of the animals are dead either. I’d get things done; dishes, laundry, cleaning, driving the kids to and from school, and going to the doctor. It was like a dream, OK, a nightmare.

I moved on to denial. I’ve been in this stage a few times on my journey. I kept thinking the doctor got it wrong. I’ll be fine. Just let me rest a while and it’ll go away. Of course this was not going to happen. Lupus is not a tumor you can just remove or a thing you can take a medication for and be cured, it’s a change to your whole lifestyle. I still struggle with this; saying I’m sick and accepting my limitations. Maybe someday it will be easier for me.

I’ve been trying to figure out when my illness became real for me. I guess it was when I received the box of things from my work desk. They were holding my job for me for 6 months, hoping I could return, and when I couldn’t they sent me my pictures and stuff from my desk. That was a hard day. It became real. I was now really unemployed and the doctors had no idea when I’d be well enough to return to work. Hell, they hadn’t even found a medication to treat my lupus yet since CellCept and Cytoxin didn’t work. I didn’t know, and still don’t know, what my life with lupus will bring. All I did know is it was real and wasn’t going away.

Bargaining is a hard one for me. I’m not spiritual so I didn’t bargain with God. I did want to revert in time (and still do) to when I was healthy and could do everything. I did do everything. I got up at 5 am every work day so I could work out for an hour before work. I drove an hour each way to work and worked 8-9 hours a day. Then took the hour drive home, made dinner for the kids and helped with homework. I took care of the house and the yard. I fixed things that broke. It was all me! And now it wasn’t. I still long for a run or to go out in the sun without worrying about getting sick, but it is not going to happen. Life as I know it has changed.

Guilt is a whole other story.  I still visit this stage. I feel guilty for not being able to return to my job, for having to be on general assistance, for being on social security, for not having the money to pay my student loan, for not having the energy to keep my house clean and organized, for not being as active with the kids and dog, and for being a burden on my newly retired parents. I blame myself for being sick. I think back to things I’ve done, ate, and drank, trying to find the one thing that made me sick. I hear about other people that have lupus and are still living their lives and feel guilty that I can’t be like them even though I read all kinds of information that states lupus effects everyone differently. The guilt is the hardest thing to deal with and family and friends never realize how much they impact this. Their words that they think aren’t bad or hurtful can be. Little things like “I wish I had all the time in the world so I could make jewelry” hurt. I didn’t choose to be sick. I wouldn’t wish this on anyone, but it’s here and there are days when I just need to do something and it’s something that makes me happy. I shouldn’t feel guilty for that.

Now all these emotions so far have been felt on the inside. I don’t remember ever sharing these feelings with anyone other than a therapist. I don’t think anyone in my family would understand or take the time to understand. They are too involved in their own lives and their own problems. They say all the cliché things; just drink more caffeine to stay awake, move around more and you’ll be less tired, snap out of it, there are people worse off then you, and my favorite, I know how you feel. I think they are all stuck in the denial stage and I don’t see them snapping out of it anytime soon.

The one I have shown on the outside is anger. I was pissed off that this happened to me. I yelled at people who didn’t understand my condition and at times snapped at people for the littlest things. This was in part to the medication I was on (prednisone) but I know it’s not the only reason.  I was (and am) mad at the world. I was mad when anything didn’t go my way and a lot didn’t. I took it out on social services, social security, lawyers and friends. I lashed out at anyone I thought deserved it although many didn’t. I know now that at these times I scared away people that were trying to help me and may have been able to at the time. And here comes the guilt I feel for being a b*&%h. *smile*

Depression was going on throughout all of these stages. I was then and still am now on Cymbalta for my depression. I don’t think I would have made it through this time without the help of a medication. The changes were too fast and far too devastating for me to handle on my own.  I don’t think anything would have gotten done; no cleaning, no eating or even taking medications. The smallest thing would make me cry especially if it had to do with something I had lost. I have lost quite a few things: My career, my house, my independence, my health, and at times, my mind. It definitely was a good thing that I did reach out to a professional for help.

The final stage is acceptance and hope. Wow, accepting that I’m sick and hoping I will be normal someday. I think I can accept that I will need to take medications for the rest of my life and that sunscreen is my new best friend, but, I don’t know, accepting that I’m sick seems like a big step. I feel like I’m admitting I’m not whole. I do hope for an effective treatment someday. This treatment, I hope, will make me able to hold down a full time job again and get back to my active lifestyle.  This is supposed to be the final stage of the grieving process, and I’m struggling with it. I’m hoping that by writing I will learn to accept it and by sharing my stories, I will give someone hope.


  1. Oh gosh, I can sooooo relate to you! Especially the steroids… its a necessary evil. They help our bodies and we need them, but they make us push away everyone with our mood swings. I always wish I was 16 again, the year before I was diagnosed.
    By the way, saying again…. so glad you started a blog!!!! xoxo

  2. […] This post was mentioned on Twitter by Melissa Fairchild, Ann Bouvette. Ann Bouvette said: Grieving for my health […]

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