MS doesn’t just affect your physical health, it can impact on your mental health too, with around half of all people with MS experiencing depression at some time in their life. That’s three times higher than for the general population. When faced with an MS diagnosis, it’s completely understandable to feel depressed, anxious or stressed, but mental health problems can also be a direct symptom of MS, just like fatigue, balance and spasticity. Remember, it’s okay not to be okay. Here, Carla King, who lives with MS, shares her experiences and offers some tips for managing mental health symptoms.
I remember being in the consultation with my neurologist. It was like I was in a film: someone talking, slowly replaced by music growing to a crescendo, as I, the main character, processed my diagnosis. Many people hear about the Kubler-Ross Curve (commonly known as the five stages of grief) at diagnosis. It’s a great, illustrative tool, used to help make sense of what we are feeling. I’d used the Curve as an HR professional, helping others through change. Here I was now searching for answers, and it finally resonated with me. But it would be another five years before I met my first MSer; another few before the reality set in.
Denial is the greatest trickster of all. It fools you into believing that everything will be as it was prior to diagnosis, which is true of some things, but not everything. The only guarantees with MS are that change will happen and that there are no certainties. The unpredictable, fluctuating nature of symptoms can lead to unexpected emotions.
MS didn’t bother me for the first few years and even when it did, I soldiered on, struggling through life and work. Stress was the main culprit behind relapses. I don’t mean everyday stress, like not missing the train or getting the children to school. I’m talking about heightened, prolonged stress that keeps you awake at night and regularly occupies your thoughts.
As a way of dealing with change, I held on to things that make me happy. Find things that bring you genuine contentment like music, exercise, a good book
We live in a world full of positivity, but when we’re having a tough time, we feel pressure for not feeling this way. Many of us call ourselves fighters, but I’ve found that it’s okay to let the MS bully win sometimes, trusting that I will eventually reset.
Denial, bargaining, frustration: I hadn’t expected that I would revisit the Curve many more times during my journey with MS, any time there was a new challenge, new drug, new healthcare professional.
Last year, dealing with a particularly insidious new symptom, I began to experience panic attacks; the kind where you can’t breathe. I couldn’t work out why they were happening, and sought help from a psychologist. Through skilled questioning, we realised it was the MS and a difficulty in wrapping my head around change. I felt better when I started to address this – when you’re faced with an unpredictable condition, taking control becomes hugely important. I began to practice mindfulness and I discovered the therapeutic benefits of blogging.
So, how did I deal with these issues?
1. I feel better when I start to address things. If the source is not obvious, then find someone to help you uncover and deal with this.
2. If you are feeling down all of the time, having outbursts of emotion such as anger, have begun to withdraw from friendships, find it hard to look forward to things, if your level of anxiety has increased and is interfering with your daily activities, talk to your GP. Medication can help, but the key can be counselling and finding coping mechanisms.
3. Be open about what you’re going through, and find someone who cares enough not to judge. People tend to be more accepting when they know what’s going on, and you are the best person to tell your story.
4. In online forums, people with MS are supportive of new members to this elite ‘club’ that connects us, and we genuinely understand what you’re feeling as we’ve been there.
5. Mindfulness doesn’t take long and can ground you, particularly when you can catastrophise, feel overwhelmed or like you’re losing perspective. Find out more here.
6. As a way of dealing with change, I held on to things that make me happy. Find things that bring you genuine contentment like music, exercise, a good book. No matter how small my achievements are, even if it’s just cooking a meal, I will figuratively pat myself on the back. My approach is practical, but I know how hard it is to see the wood for the trees when you’re overwhelmed. My feeling is that you have to put yourself first, and that if you don’t deal with issues urgently, they have a tendency to spiral out of control. At the same time, I’ve realised that just as our MS is individual, so is our approach to it. For example, we wouldn’t tell some someone grieving to ‘get over it.’ If we continue to prioritise physical symptoms above mental health issues, we won’t access support when we most need it. Strength and resilience come from recognising when something is not going well, as much as it is about celebrating achievements. We have the right to a better quality of life.
Carla King was diagnosed with MS in 2008, having had her first relapse in 2005. Follow Carla on Twitter @CarlaKCoach or via her blog: mymsbullyandme.blogspot.com.
