It’s only two and a half months ago when the neurologist gave me the diagnosis of secundary-progressive MS. When he told us (my husband and me) we were not surprised. This message made us understand the things that happened to me in (at least) the last 13 years. So, in the beginning I was nearly ‘happy’ with the message of having MS. Now, after a while, I start to think of being in one of the 5 stages of mourning as Dr. Elisabeth Kübler-Ross described them. I don’t know in which stage I am, but I am convinced of the fact that a serious illness like MS (and knowing to have it, of course) can lead to serious mourning. And this comes apart from the suffering of being ill.
Stages of mourning
- Denial– “I feel fine. This can’t be true, not for me.”
Denial is what in the case of MS a patient does only short, temporarily. You can recognize this feeling for example when it’s about what can or can’t be done. Think of work. Or of sports activities. Some things you just can’t do anymore. I used to go running, until four years ago. Then I had to stop because of my dizziness. After that I did what I always liked a lot: making long walks. But I can’t do that anymore either. First, I tried to deny the inability to run or walk. Now however, I am forced by my illness to stop denying that I am no longer able to do these things. Denial doesn’t help anymore.
- Anger – “Why me? It’s not fair! How does this happen to me? I have three growing up children, wonderful work, a super husband. Why must they be involved? What did I do wrong?”
I feel anger with my children because of the fact that hey don’t understand what’s happening to me. I feel anger against my parents. They help me constantly but they tell me what to do or not. And they ignore me and turn to my husband with their questions. I hate it to be so dependant of others. I hate them all.
- Negotiate – “For some time I will stay in the shape of being normal. You can depend on me being normal.”
In this stage you can try to postpone the situation of being a total MS patient. That makes it, in the case of MS, totally different, I think. Because there are as many kinds of MS as there are patients having MS. Because it took so long for me until I received the diagnosis of MS, I have secondary progressive MS now. It is not very clear whether medication can help me to postpone some situations. How to negotiate? Can you tell me?
- Depression – “I am sad and not able to go. I don’t want to go, to join normal situations with people who are not ill.”
You start to understand what’s really going on. It stops you from denying, being mad, negotiate. You can’t be cheered up. It makes you unhappy and sad, gloomy.
- Acceptation– “I won’t avoid it anymore. I will adjust my life to my illness.”
In this stage it is time to be ready for where life leads to with MS. I think this is a stage I am not really ready for now. I also think people around me are not ready for this. I am not sure if my environment and me go through the same process of mourning. Should we do it together or not? I feel different things, physically and mentally. They do not.
Mindfulness gives me the hope and help to go through these stages properly. They help me to cope with my situations, my uncomfortable feelings, but also with the way of communicating with my environment. I am happy with the convincing mindfulness thought: It is like it is. I think it helps me going on. I hope that my approach will help people around me too.