Mental Health in MS – It is OK to not be OK

I’ve written about this before, but it’s a topic I feel is really important for anyone whether you have MS or not. I have recently been made more acutely aware of mental health since someone I knew committed suicide, and I have noticed my own resilience levels slipping into the reserves (for other reasons actually)


MS doesn’t just impact on your physical health, it can have a significant impact on your mental health as well. Around half of the people with multiple sclerosis are said to suffer with some depression or mental health problem at one time. Personally, I would say that it is probably higher than this, with those who do not seek help going unreported. 

When initially faced with a diagnosis, it is a very anxious and upsetting time and is understandable that many people at this time are reported to suffer mental health problems. 

Mental health issues are equally sometimes a direct consequence of having MS due to the location of lesions in the brain. More frequently however, depression, stress and anxiety are often a bi product of the other ms symptoms such as fatigue, insomnia and pain for example. 

Mental health week is coming up in April, so I have decided to speak up about mental health and am encouraging you to do the same. I thought I would share some of my experiences as someone with MS – perhaps some of these will resonate with you? 


It’s been some time since my diagnosis – I was diagnosed in 2013 and now we are 7 years on and I’m still trying to work out how I feel about having the disease. I think I have come to terms with being someone who has MS and I think that I’ve accepted it into my life…  but then who knows? Tomorrow I might feel entirely different about this!? 

I remember when I went into the consultants office to receive the information there were lesions on my brain. I had gone to the appointment on my own because so many consultants had been dismissive before that I believed that I would be walking out of there after another one told me that they couldn’t help me with my symptoms. 

How wrong was I? After hearing the news that I had MS, it was like I was submerged in a swimming pool and I could hear things going on around me but they didn’t sound quite right. I felt like I was in a strange bubble. The walk home was the weirdest. 

I had to go into the house and tell my partner (now husband) the news… i don’t remember the conversation. I think I’ve blanked that out along with the one I had with my mum and my sister. I don’t remember telling my dad either. There’s strange things that your mind does for you so you can survive and I think my mind loves shutting things away I little boxes. 

I am not sure how I would explain what happened next. They say that you go through the 5 (or 7 is it?!) stages of grief when you are diagnosed. It had never really been relevant to me as before then I had never lost anyone at that point in my life. Well I had divorced parents but I had never really associated that with grief. Anyway. 


Here I was now and I was – well – I guess I went into denial. I threw myself into my work believing that everything could be the same as it was before I was diagnosed. I wanted people to see that I was strong and there was nothing wrong with me. I tried to push through as much as I could despite feeling the worst that I ever have done. 

I didn’t really talk about how I felt about having MS with anyone. I didn’t want to share my symptoms and my feelings – it was my disease and my problem and I wanted to deal with it on my own. 

I know that the over riding concern was that my family and friends wouldn’t be able to understand or would worry too much if I shared my illness with them.

One of the things that I struggled with then, and continue to struggle with now is that we live in a world where we are expected to be ok, we are expected to be positive all of the time. When we don’t feel that way, we question ourselves and feel a pressure from within and from others. 


I myself have given my own blog site the name of MS warriors. I realise now that it is actually a misnomer – I don’t really want to consider myself a warrior, I am not fighting a war with my body or MS. Perhaps once when I was first diagnosed, I felt that I was in a battle with myself…  now I think entirely differently. I am at peace with having MS and I am ok with not being ok all of the time.  

I have been considering renaming my blog for some time. Not sure how to do this but any ideas for new names would be welcome. 


Anyway – back to this grief thing. Well one of the things that strikes me is that with a chronic disease like MS, you come back to the cycle over again. Whenever I’ve faced a new challenge, some new or quirky symptom, realised something new I cannot do or something else I have to give up. I’ve also gone through it when I’ve lost some of my social circle, when I’ve had to go and see even more healthcare professionals… or I’ve been presented with a new challenge. 

In 2018 I started feeling especially anxious and was referred to a Neuro Psychologist. In addition to many things that we talked about, we chatted about how hard it was to deal with such a changeable disease and how to live your life with the uncertainties that MS brings. He made some suggestions to me, and always wishing to be the best student possible – I made sure I followed up on every one. 

One of the things that he suggested to me was making sure to reach out and see my friends more often. He suggested that I try and be more open about how I was feeling, and suggested that I tried mindfulness. 

How did this go for me? Well, I did reach out to my friends more often and I now see my friends most weeks. I’d say that my friendship group hasn’t grown bigger but those friends that I do have, the relationships have gotten stronger. 

I also pushed myself and started a ms group in my area – this was really challenging for me!! I don’t always enjoy going to the group (it puts me seriously out of my comfort zone) but I do take a lot of pleasure seeing how the group benefits other people. 

Being more open – this was serving me well for quite some time but recently I’ve slipped back into my old closed ways!! I started my blog to try and be more open and as you’ll have noticed, my blogs have dwindled recently too!! I did notice that being more open also contributed to having more meaningful relationships with people as well… 

As for mindfulness. Well this can take many forms luckily. For me I struggle to sit and not do anything so I started playing the piano again, I have attempted to go back to choir, and I have been exercising. I have found that when I do those things I am only able to be present in that moment and it brings such joy. 

This blog is already really long but I thought I would end with my tips for looking after your mental health. 

  1. If you don’t know how you feel or how to deal with something, then go and find someone who can help you work through things. 
  2. Surround yourself with people who will not judge you. I am not very good at this but try and be open about your feelings. 
  3. Try and think about things you are good at, and find new things you can do. Stop thinking of the things you’ve had to give up because of MS. I could make a huge list of the things I cannot do because of ms but equally I have a new list of the new things I have tried, and the amazing new people I’ve met. 
  4. Try out mindfulness – I was never going to be someone who sat and did meditation but if this works for you then great. I found peace with doing yoga, walking in the park and playing the piano. You might find it cooking or reading a book. Whatever it is, just be present with what you do. 

Right that’s me done for this blog. Phew. That was a long one. 

All the best until next time. 

Z

2 thoughts on “Mental Health in MS – It is OK to not be OK

    1. That sounds great Joan – I think that we need to raise awareness of mental health. One of the thinks I’m going to be writing about in coming weeks is the ms personality, and also about cog fog. I am excited to share my stories on this however the blog will be taking a more personal tone which I’m not always comfortable with. I enjoy being objective and matter of fact – it’s always hard to put yourself on show for others to judge?!

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