Making the invisible, visible

Today, I wanted to talk a bit more about the invisible side of MS.

Medical problems that have invisible symptoms are frustrating because others often fail to realise the limitations that they impose. MS is one of those bloody frustrating conditions that can cause both visible and invisible symptoms. 

Sometimes, as I’m sure most of you are aware, MS causes noticeable physical impairments including problems with walking, hand tremors and speech difficulties. Physical impairments complicate everyday tasks and can therefore impact a person’s life significantly. Some people may need to use a wheelchair or walking aid to help with these problems. However, sometimes the problems caused by MS are not obvious to the outside world. Although invisible symptoms may have a profound effect on a person and how they function in their daily life, the symptoms are not evident to people around them.

So, I’m going to try and explain some of the struggles that people face because of the invisibility of MS:

Helping people understand that every day is different

Our lives with invisible illnesses are unpredictable. Our symptoms can change constantly and really we never know what we’re going to wake up feeling like. Not having control of your body and not knowing how you’re going to feel from one day to the next is scary. Some symptoms, like vision problems can even fluctuate from hour to hour which can make it even harder to explain that sometimes a person will have the problem and sometimes they won’t.

Being labeled as ‘disabled’ without being ‘visibly disabled’

Even for those who legally qualify as disabled, the word is a loaded one. Many feel that the term does not really apply to them, especially if their condition is not visible to outsiders. When people hear the word ‘disabled’ they instantly think of someone in a wheelchair. It’s challenging because if someone uses a wheelchair and therefore is ‘visibly disabled’, it can be easier to understand the difficulties they might face and to support them. 

The need to educate others

When others don’t see us as being visibly ill, but see us taking time off work, taking the lift instead of the stairs, and so on, they may think we are just lazy. We are then forced to defend ourselves and we have to constantly educate other people, which can be exhausting.

Challenging misconceptions

There are also a lot of misconceptions about MS, and one of the most common is that the more visible a problem is, the more serious it is. MS looks different on each person who has it. MS looks like me, looks like you, looks like anyone and everyone. How it affects a person will depend on what part of the central nervous system is damaged. Some illnesses have patterns of symptoms that develop along a timeline and usually, it would be obvious where someone is in a disease course by looking at the symptoms they have. MS is different because it doesn’t progress in any particular way and it’s pretty much impossible to tell how ‘bad’ someone’s MS is. Did you know someone using a wheelchair or walking aid doesn’t necessarily mean that they have ‘worse’ MS than someone who is not, it just means that the damage is in a different part of the central nervous system? Crazy, I know.

Having to justifying yourself

Vision impairments, numbness, fatigue, pain, and cognitive problems are some of the common invisible symptoms of MS. And although they alter what a person can do, they don’t necessarily alter what other people expect that person to do. Invisible symptoms do not only cause limitations in daily life, but they can also be emotionally draining because they require a person to explain and justify their illness.

Dealing with ‘but you don’t look ill…’

There is no worse feeling than to be in pain or having any of the other awful symptoms I’ve mentioned and then having to worry about people not believing it’s real. As much as it’s nice to hear ‘but you look so well’ and ‘but you don’t look ill’, it almost comes with an air of disbelief. When people see me working, going out, getting dressed up, looking like everyone else and then they find out I have MS – I get it, it must be confusing. Yes, I might look well but what if underneath I am suffering? How do you know I didn’t spend the last day in bed conjuring up enough energy to be able to go out with my friends? How do you know I didn’t spend last night crying myself to sleep in pain? How do you know that I’m not desperate to go back to bed but I’m just putting on a brave face? How do you know that I haven’t just had a panic attack before leaving the house? How do you know anything just by looking at someone? The answer is, you don’t. You don’t know anything. The truth is, some days, it’s hard to act and look ‘normal’ but I’ll give it my best shot, because, at the end of the day, that’s all I really want – to be ‘normal’. I do my best to look like nothing is wrong. Sure, sometimes I have to give in to my illness and when I do, honestly, it’s a really really shit day.

The fact that even doctors don’t always understand

Many people also have trouble with not only convincing doctors that they have issues but also explaining to them what their symptoms are. We are put in a place where many times we have to explain what we are physically feeling to medical staff; and let me tell you – that’s not easy. It’s hard to get the appropriate attention you need when the doctor cannot physically inspect the issue. 

Psychological challenges

Changes in a person’s physical ability can cause psychological challenges, including feelings of anger, grief, guilt, anxiety, and depression. As with any longterm health condition, MS can take a toll on your mental health. Of course, symptoms such as depression, anxiety, and mood swings are all ‘invisible’ which can be caused from the changes that have happened to your body and the uncertainty that comes with the illness. The disease itself may also cause depression – as MS attacks the myelin, your nerves may no longer be able to correctly transmit the electrical impulses that affect your mood. Of course, there can be many other triggers for mental health issues but it’s no one’s fault and it’s certainly nothing to be ashamed of. After all, if a person had a broken leg, it would be treated by stabilising the fracture with a cast. If a person had a viral infection, it would be treated with a course of antibiotics. So why, if someone has a chemical imbalance in their brain or is struggling their way through life, wouldn’t it be acceptable for them to take anti-depressants or to go and speak to someone to help them? To understand mental illness is not always easy, but it, nevertheless, is an illness like a physical illness. This is where work needs to be done to help people understand that mental illness is a true illness that deserves the same level of compassion that is given to someone with a physical illness. 

Unfortunately, many people can’t see past what their eyes show them and it’s a shame that’s the way our world is today. Our society is constantly guilty of being judgmental based on appearance. This isn’t something that’s going to change from one minute to the next, but perhaps the more knowledge people have, the kinder they can become? After all, the first step to change is awareness.

I do believe that times are slowly changing and I have hope that with more awareness and understanding, life for people with invisible illnesses will get easier.

Let’s make the invisible, visible.

Thanks for reading,
Amy x