Invisible Illness - Caring for someone you love

Over the last couple of weeks I’ve been posting about various aspects of invisible illnesses, including my experiences, the experience of someone who is severely affected and also the massive effects illness can have on somebody who is ‘only’ mildly affected. Bethany has very kindly written a short extract, which I have published in this post, discussing what it is like to have an invisible illness, but to also have to care for other family members who also have invisible illnesses.

I feel that this is an important aspect to cover because a lot of invisible illnesses have a genetic component, meaning it is more likely for family members to experience similar symptoms. It is obviously very difficult having someone in the family who is unwell, but imagine how it must be to have several family members experiencing illness. There is very little support out there, so often, these families have to support each other as best they can to get through each day. They will often miss out on medical support because they cannot get to appointments and can go weeks without seeing anyone else socially.

This is only one story about a family’s experiences of invisible illness. There are so many more out there who try to cope with severe illness and isolation. I hope that this short extract will open people’s eyes to invisible illnesses and show that there are people out there who, despite being totally deserving, will do everything in their power to avoid claiming benefits. It’s these people who really need our help and support, but they are often, understandably, too proud to ask for it. If you know a family who struggle with any illness, invisible or visible, why not give them a ring, or pop in for a chat now and again. It could be the only thing that breaks weeks of loneliness and isolation.

Bethany when she was younger, with her Mum

I still remember the doctor’s words to me on 8th March 2004, "I don't like diagnosing this condition as most parents claim benefits, but you have M.E." At the age of 11 I didn't know what it meant but I knew it had involved lots of painful tests.

I had suffered with the symptoms for six months before being told, which included weight loss, tiredness, pain everywhere meaning I sometimes couldn't move, concentration and memory problems. Before I was diagnosed I was classed as a young carer for my mum and brother.

Fast-forward ten years; I still am a carer for my family, while trying to work so I don't claim benefits. My mum has epliepsy, diabetes and non-alcoholic liver disease, while my brother has foetal valproate syndrome, glaucoma, cataracts, arthritis, autism, global development delay, as well as both an over and under active thyroid.

Most days it's a struggle to get up as my brother has a routine that must be kept. As well as that I have to make sure everyone takes their medication, which often results in me forgetting to take mine, leaving me in pain every day. It's hard having to find a balance so I can rest for work but thankfully I have a boss who is understanding of my situation.

It is difficult for people to understand how difficult invisible illnesses can be when your family looks so normal from the outside

It's hard for people to see that my whole family has health problems because on the outside we look like a normal family, but inside it's a different story. As well as M.E I have epliepsy and foetal valproate syndrome myself, so my Mum tries her best so I can rest before work or college, which I attend once every 3 weeks, or if I just need a little rest as I've had a bad day.

Do you know a young carer, or someone who cares for another family member? Is there something you could do to make life a little easier for them?

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