It is Invisible Disabilities Week 2021 and as an advocate, carer, and person with invisible illnesses I wanted to talk a bit about my own experiences. I hope this article helps you to feel a little less alone.
I am on TikTok and I tell you this because most days I dance on there to show my vintage style outfit of the day, and if that was all you saw me do you would probably assume I was well. I don’t usually use a mobility aid around the house, and so I don’t usually have one while I dance, but I am disabled.
What you cannot see is chronic pain, depression, numbness in my limbs, incontinence, memory problems, an anxiety disorder, chronic headaches, migraines and chronic fatigue. This is why it is important we talk about invisible disabilities because we need to realise that just because you cannot see it, doesn’t mean that it is fake!
My invisible disabilities:
- Ehlers Danlos Syndrome – This is something I was born with and has caused a great deal of pain throughout my life, I was often taken to the doctors with painful joints and told it was just growing pains. This illness means my joints are unstable and I can easily overwork them and this can cause dislocations.
- Fibromyalgia – This illness causes so many crazy symptoms, but mainly to me it leads to numbness, pain, brain fog, inability to maintain body temperature, and fatigue. We don’t know what causes Fibro, but for me they think it came from the EDS putting a lot of stress on my joints…but that is just a theory.
- Neurological – So at one point Drs thought I had multiple sclerosis, when they realised I didn’t I was told I did have neuro issues but as I was likely born with it they wouldn’t investigate. I have a lot of neurological issues including problems remembering things, confusion, not very good gripping in my hands, and I cannot feel when I need the toilet.
- Myalgic encephalomyelitis – This is more comonly known as Chronic Fatigue Syndrome, but it is so much more than fatigue. I also have problems with overwhelm when I am out and it is too loud or busy, brain fog, and if I am struggling with my fatigue I shake a lot and need help getting dressed, eating and drinking and I will find it impossible to shower. This can last for days sometimes and I have to rest a lot during the day so I don’t cause a flare.
- Chronic depression – I have had this since I was 14years old, and is something that comes and goes with no real rhyme or reason. It is very hard to deal with when it flares, however, I have a good level of meds that keep it in check most of the time. Mindfulness and general self care help a lot to keep on top of my negative thoughts and most of the time I can notice when it is creeping back in.
- Generalised Anxiety Disorder – This is a mental health condition and leaves me anxious most of the time, I battle it by keeping to quite a strict routine day to day. Any change in that routine can leave me in a panic attack or having a melt down because I cannot control the situation. It is believed this is a trauma response and so it takes a lot of therapy and hard work to keep on top of a mind that thinks the worst of every situation.
- Chronic migraines and headaches – As you can imagine these affect me a lot, and I usually have some kind of headache or migraine every day. Most of the time it is a small pain that I can kind of ignore, and I am very thankful of that, but sometimes it is extra meds and time in bed.
Now, after seeing how these things affect me, do you think any of them are easy to see? If I am not using a mobility aid, the answer is no and this is why I stand up and try to do my best to share my experiences. Not every disabled person is in a wheelchair full time, or lost a limb, or has learning disabilities so severe you can see them just by looking.
Invisible disabilities are far less accepted by society, we are unlikely to get help from friends and family and more likely to have to battle the government for benefits we need. We are the silent warriors who you do not see out and about very much because we tend to only be in public on a good day.
So I hope that by reading this, you will come to see how important Invisible Disabilities Week 2021 is and how much it means to me to share my experiences. Disabled people are all different, we all need different things and use mobility aids in a way that might look fake to you but help us to have some freedom.