When you look at me, you wouldn’t think I have a life-changing disease like multiple sclerosis. When you look at me I imagine you see a smart and capable woman. You see a mother who is also a successful scientist. You see a generous friend who is also an athlete. You see someone who is fulfilled by life and wanting to give back. That’s all me. What you don’t see is someone who has limited feeling in her right arm and tingling and numbness extending all the way down to the toes on her right leg. You don’t see the loss of hearing in her right ear and the constant ringing from the damage to her auditory nerve. You don’t see the fatigue as she continues to achieve as much as she can each day. That’s all me too.
When I heard I may have MS, my first thought was of people in wheelchairs, with walking frames, who spoke slowly and very deliberately. I didn’t think of the average woman in her 30s sitting next to me on the train. I thought of people who had lost their dreams as the disease ravaged their bodies, I didn’t think of people who had changed their dreams to adapt to their new abilities. I, like many people, had a very narrow picture of what MS was and what life with MS is. Whilst this picture captures some of us, it misses out on most of us and underplays the significance of this disease.
The reason you look at me and don’t see the MS is because my symptoms are all subtle. You can’t be in my body to experience them. The deafness, the ringing, the loss of strength or sensation, the fatigue; I can tell you about them, but they aren’t visible. That’s the thing about MS, it’s surreptitious, it’s sneaky, it’s often invisible until further into your disease progression where it may start to manifest as more obvious walking difficulties or cognitive disability.
This presents a suite of challenges.
On the one hand, I can go out in public, meet new people and as long as they don’t google me they would have no clue that I had MS. This can help people to feel normal, like there isn’t anything wrong with them, that they can be and feel like a “normal” person, just part of the crowd. On the other hand, I can go out in public, get on a packed train and want to take a seat as I am so fatigued I’m not sure I will be able to get myself home, but to everyone there I am young and fit, why am I being so selfish as to take a seat that someone else could be using?
On the one hand those who know me and see me regularly are able to say that I’m doing great, that I look good, look healthy. On the other hand they can’t see the effort it took me that morning to get my day-face on to get out of the house. Most days I am experiencing some symptom from my MS, usually I am experiencing more than one. I have a constant reminder of my disease and it’s activity, but you can’t see it and I would wear anyone out by telling them about it at every moment. So, for the most part I present as your average, healthy, normal person. To be honest I feel mostly like your average, healthy, normal person, but I want to help you to understand that the looks can be deceiving.
Multiple sclerosis can impact any part of your brain, spinal cord, and optic nerve. Anything in your body that is controlled by those things can be impacted. You can lose vision, sensation, hearing, balance, you can lose bowel and bladder control, the ability to think and speak. Anything that your nervous system is controlling (which to be honest is pretty much everything) can be impacted by MS. This is why they say no two cases are alike. There is a whole body that can be impacted and where your lesions appear are unique to you, but no part of your body is safe.
Multiple sclerosis is probably more common that you think as well, and it’s on the increase. If you’re reading this after clicking a link on my Facebook page, we probably have a mutual friend that has MS. If you’re clicking a link on my Instagram page, you probably follow someone in your feed that has MS. If you’re reading this whilst at a (socially distanced) cafe there is probably someone around you that has MS. Worldwide more than 2.3 million people have MS, and in Australia more than 10 Australians are diagnosed every week. Of these people they are predominately women (3 quarters of all cases), and are between 20 and 40 years of age. Let’s think about this for a minute to understand the impact. Not only are the symptoms often debilitating and invisible, they are impacting people when they are arguably at the most productive stage of their lives. This disease, the most common acquired disease of the central nervous system in young adults, is hitting people at a time when they are aiming to excel at work, to start families, to travel overseas, the time when they are working to create their best future. That’s when MS tends to hit. This costs a lot; loss of income, independence, relationships, opportunities but to the person with MS and to their family, friends, and community. Yet most of the time we can’t even see it.
I personally often feel a lot of guilt around my MS. I also tend to feel that I’m not understood. I am not a slacker and I push myself hard, am always on the go – it’s definitely a trait of my family. So when I am struggling with fatigue, or my hand isn’t working properly, I feel that I’m failing. I feel that I need to push through, and if I do cancel something I feel guilty about it, that I’m being lazy. On the other hand, I sometimes feel that I need more help. That I have been trying so hard to not let my MS be an issue, that I haven’t spoken about how I’m having a hard day so as not to increase the mental burden on others unnecessarily, but that they then don’t understand when I say I need help because I was doing just fine. This is the biggest learning curve for me with my invisible symptoms, balancing out what I want to do with what I can do, talking about how I’m feeling and when to ask for help before it’s too late, and being a little kinder to myself instead of feeling guilt or admonishing myself when it is uncalled-for.
This is the same for everyone. Whether you have MS or not, what’s going on under the surface is something we can’t see. I can’t see if you’re struggling with depression when you smile at me in the morning. I can’t see if you have anxiety when I pass you in the street. I can’t see your struggles, just as you can’t see mine. To me, that’s a reminder that we need to be gentler with each other, kinder with each other. We are all going through something, whatever our burdens are, so really we’re in this together. It’s not a contest of who is struggling more, who has it worst off, it’s a moment of connection, of compassion. I see you. I don’t see what you are struggling with, but I see you. I will appreciate you in this moment for however you are presenting yourself to me and see you for more than what you are holding back. We are all struggling with something invisible.