It’s Invisible Illness Awareness Week! Well, only just – it runs from the 15th to the 21st October 2017, so it’s ending today and I’ve almost left it too late to write anything. I’m back at work now, so it is much, much harder to keep to writing a weekly blog post, which is what I strive for.
The past couple weeks have been full of work, taking the kids to their after school activities and… well, that’s it. But that is enough. I’m done in – and don’t I know it. I have come down with a cough and ongoing headache and I’m back to falling asleep on the sofa as soon as the kids are in bed. That’s work when you have Secondary Progressive MS for you. But you know what? One of the most frustrating things is that, on the outside, people see my dodgy leg and that’s it. People at work say that I’m ‘looking good’, but they don’t see the light-reflecting concealer that I shove on under my eyes to hide the dark patches or the blush I use to try and hide my fatigued-pale skin. I put 100% of energy into being a good therapist, doing my best job, that outsiders don’t realise everything that is happening that they can’t see.
I guess this is where Invisible Illness Awareness Week comes in. Yes, I use crutches, yes, I have a weird limp where my leg flings out and, yes, I have fallen and stumbled at work too many times for my liking. But MS, like so may other chronic illnesses, is so much more than you can physically see:
- Just because I look ok (i.e. vaguely pulled together!) and am smiling, doesn’t mean that I feel ok inside. Mentally, I’m tired. Physically, I’m at the stage of my MS that my body is constantly reminding me about it; tight, spastic limbs and feet, overwhelming feelings of fatigue and constant ‘buzzing’ sensations in my limbs (so hard to describe!). Don’t get me wrong, I can still laugh and see the funny side to situations, I still enjoy life and being with family and friends, but all these physical feelings are happening at the same time and I can’t ignore them. I fake being well with my visible illness.
- Others might not understand my limitations, but I ask that they are accepted regardless. I started blogging because it helps me to get my feelings out and I am aware that when I write about the symptoms of MS, how it affects me, I often am repeating myself! But it is because I know that, no matter how close I am to somebody, unless they have MS or another chronic illness, they don’t fully ‘get it’. I try to not constantly talk about it with loved ones, but I still need to have the opportunity to moan. Writing is my moaning! And if people are sick of hearing me moan, believe me when say that I am so sick of living with the things that make me moan. Others may be able to ‘switch off’ from hearing me complain, but I unfortunately can’t switch off my MS. That’s why I ask that my MS is accepted as part of me.
- Mobility issues and fatigue are my two biggest MS symptoms. My mobility issues are obvious, as detailed above, but the fatigue may be less so. My husband definitely sees when I can’t do anything except sit and rest, but a big part of it is also the effect it has on my mental functioning – difficulties concentrating, word finding problems, memory issues and low tolerance of busy, noisy places. All of this is invisible when people look at me, but it is the reason why I am finding work so hard. But how do you prove this? Unfortunately for me, the after effects of work happen when I get home and on my days off, so family feel the brunt of it.
- I’m not getting better. This is not only hard for me to accept but also – maybe especially – for loved ones to accept. Most people feel shitty when they have a flu or cold and I totally get that because I feel that too. But I remember getting better from that cold or flu and being able to get on with my life, feeling clear headed and sprightly. Sprightly is now not in my vocabulary. I never really feel well and I miss it. I imagine it’s hard for ‘well’ people to put themselves into my shoes.
Ultimately, I would never wish my mobility difficulties on anyone, but I guess that they act as a ‘red flag’, telling others that I’m not well. Some people with MS and indeed other illnesses, however, deal with only invisible symptoms. How frustrating would that be? For people to just have to take your word that you are ill? I hate that in this day and age people still say ‘well done’ to me at work because, ‘so many people get a diagnosis and just say they can’t work’. If only people would understand that giving up work, for someone who considers it a massive part of their ‘self’, is the most difficult, heart-breaking decision to be made. And that’s the big thing: understanding. I hope that over time ‘Invisible Illness Awareness Week’ does help to raise awareness and therefore knowledge and understanding about things that people would otherwise not know about or consider.
My number one piece of advice to those who have an invisible illness – even if other parts are visible, like mine – is to seek out a support group. Whether that is locally or online, through Facebook or a chat forum, ‘meeting’ others who are going through the same things is invaluable. I love the fact that I can have my moan and others ‘get it’ – it truly makes me feel less alone and more understood. I’m hoping that the awareness hopefully raised through Invisible Illness Awareness Week is carried on through the year and that everybody reading has a fab rest of the weekend 🙂