Over this past month my grandfather and my Nan both passed away, but both lived a long and full life, and although we expected them to die, their deaths were pretty sudden.
To be honest, these were the first ‘major’ deaths that I have had to deal with in my adult life and for that I guess I could say that I am incredibly lucky. The last time I had to think about death was when my beloved cat passed away, and that is just not the same (as heartbroken as I was).
Anyway – you might ask why I am waffling on about the passing of a family member and what it has to do with MS. Well, since it has happened, I have had a much harder time dealing with it than I thought I would, especially as I have been trying to juggle having MS and quite a stressful full time job. I also think it has been hard admitting that I am actually really sad about having seen my grandfather pass away. Through this , I have learned a lot about myself and grief and have been thinking about when I was first diagnosed.
When you are first diagnosed with a chronic illness like MS, you also have to go through the grieving process. In actual fact, I think you have mini grieving sessions each time the disease effects you in a new way – like recently when my bladder started getting worse and I had to admit defeat and go and accept more help (more to follow on the Botox front), or when you are reminded that you cannot do something anymore. Each time you have a mini grief cycle.
So, here are my 8 lessons about grief that I have learned from losing a loved one that I think apply to grieving in a chronic disease
1. Take some time for yourself to reflect
I think that this might be one of the things that I did not do when I was first diagnosed and I perhaps regret this the most. I remember receiving the news about my diagnosis and I rushed straight back in to work. Perhaps I was trying to pretend that everything was ok… perhaps it was blatant denial. Either way, I didn’t achieve anything by doing that. I ended up crashing and burning. At the time I was a chemistry teacher – my relapse got worse, I was completely ineffective in the classroom, I hated being in the school and the school did not know how to support me. In the end I took a lot of time off because I was emotionally and physically battered.
I think it would have been much better if I had taken even a short break straight after I found out. It would have allowed me to digest what had happened and what I wanted to do next. It would have been super useful to be able to plan how I would respond to people who asked me what was wrong… and be able to explain the diagnosis and what it meant to me.
2. If you feel disbelief or denial – that is ok
Being diagnosed with something that will impact you for the rest of your life is really hard to accept, and it is ok to feel numbness and shock, sadness, or even be in denial about the whole thing. I remember when I was first diagnosed I couldn’t quite get my head around the fact that I had MS, so I tried to throw myself in to avoiding thinking about it. I tried to keep as busy as possible to make sure my mind had no time to think.
It does take a while for the denial and disbelief to fade, but it does happen.
3. You might not cry to start off with
When I went to get my results and I was told I had MS, I distinctly remember not feeling sadness. I remember that I didn’t cry on that day. Or the next day. In fact, I felt relief, in part because i was being told that it was not a brain tumour, and also because after a long journey of feeling like a fraud, they had actually found what was wrong!
Tears do not indicate how much you care about something. Just because you don’t cry doesn’t mean you don’t care. The same goes for your family and friends – remember to cut them some slack. Just because they don’t appear sad for you, or they don’t appear to understand you, everyone responds differently to sad news.
I learned this during the death of my grandfather. We had those that were belting out tears and those who were silent. It didn’t mean that he meant any less to them, we all just respond in our own way.
4. You are entitled to relive your memories, but don’t get stuck in them
The problem with MS I suppose is that quite often it means that you aren’t able to do things anymore that you used to do… I often hear myself saying ‘when I used to…’ and ‘before I had MS…’ It’s totally ok to relive your memories and wish that you were still able to do things that you aren’t able to do anymore – just like when you remember a loved one that has passed away. BUT try and remember these as fond memories of a previous time, and don’t forget that you are still here to make new memories.
Although I know I am not able to do some things anymore, I sure as hell can do loads of great new things. I have taken up new hobbies and made new friends. As well as fondly remembering some of the old things that I can’t do anymore, I am living in the present and making the best of what I have.
5. You might lose friends (and family) but you may get some new ones and reconnect with others
The reason I think of this in relation to grief is that quite often when a loved one passes away, you reconnect with family and friends. Loss tends to bring people together and often makes us appreciate what we have, those around us and who we are. It can make you consider your own mortality. Although it’s a pity that it takes a loss to do that, it is great to be able to reconnect.
I guess the same happens with MS – you hear the news and you tend to reevaluate what is important to you. I know that I did – I reassessed the relationships that I had with my family, how often I was in contact with them and what I could do more to stay in touch with family and friends. It made me realise that sometimes I was too distant… and I would put more effort in to maintaining the friendships and family links that I had.
As well as this, being diagnosed with MS meant that I lost quite a few friends – probably because I wasn’t able to do the things I used to do… definitely because people didn’t understand me anymore. Absolutely because I lost confidence in myself. However, one of the things that I have found is that I have made new friends that I never thought I would, and have reconnected with family. Since being diagnosed, I have actively tried to connect with more people and put myself out there (this blog speaks for itself).
6. You may feel guilty about not being OK
With my grandad passing away, I have wondered about whether it is ok to feel ‘not ok’. I am usually a super strong person who doesn’t get rattled by many things, and the feeling of not being ok is unusual for me.
Thinking back to the general grieving process and grieving when diagnosed for the first time, I remember feeling that I had to appear OK and didn’t give myself the time to not be mentally headstrong – I think that the overwhelming emotion was guilt that I might not be ok. Guilt is such a powerful emotion. If you let it rule how you feel then you run the risk of hiding your true emotions from others. By squashing them down inside there’s a very good probability they’ll explode out and hit you at a later date when you aren’t expecting them to (I have experienced this and I know!!)
It doesn’t matter whether you are grieving for the diagnosis of a disease or a loved one, the message is still the same. It is ok to not be ok – you don’t need to justify your emotions to yourself or anyone else!
7. Everyone will deal with things in their own way
Although I have written this in light of someone passing away, I think it applies to how I handle any major life incident. In grieving for the loss of a loved one, I have learned quite a bit about myself. Although I love the fact that I am generous in my time with others, I don’t give myself enough time, I often feel guilty, I always feel I need to justify myself and my emotions to others and I will at some point feel regret for my actions.
The last thing that I learned from my experience recently though is that everyone will deal with things in their own way and in their own time. Like with the passing of a loved one, people respond to a diagnosis in lots of different ways, and there isn’t a ‘single size policy’.
When I log onto forums and look at responses to questions, I get the feeling that some people forget this, giving advice as if it were gospel – but everyone has their own story and unique set of circumstances. It became even more apparent when someone I love that is close to me recently received a diagnosis of their own and their response is incredibly different from my own. I am trying to be mindful of their unique journey and their individual needs rather than push my expectations on to them.
7. (part II) if someone who doesn’t have MS is reading this…
Although this would make it lesson number 8… but this is a follow on from number 7 actually for people who are reading this that don’t have MS. Unless you experience a diagnosis of a chronic illness such as MS, or some news that will absolutely change your entire life as you know it, you will never know how you will respond.
It is very easy to say what you would do (and by gosh we all know someone who is full of wisdom), but all of that goes out of the window if that moment comes in reality. The very most that you can do to support someone that you love who has MS (or any other chronic illness), is to be patient, loving and tolerant and ask what that person needs or wants you to do.
That is all for this week folks – let me know what you think of my lessons learned and whether you think that they apply to you? Did you feel any of these when you were diagnosed? Are there any extras that I have missed off? Do you completely disagree with everything I have said!!? Let me know – would love to hear from you