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The Mental Effects of an Invisible Illness...

by Melissa Stafford 2 years ago in support

Why you shouldn't judge a book by its cover

It's surprising that over a third to half of the UK may be suffering from a chronic illness, but it's even more surprising at how little people actually know about them.

The chances are someone you know suffers with a chronic (pain) illness; Multiple Sclerosis, Chronic Fatigue, Fibromyalgia, Ehlers-Danlos, Lupus, Chrohn's, Myalgic Encephalomyelitis... the list goes on into several categories, so I'll stop there.

Despite there being differences in all these conditions, one of the factors that remains prevalent throughout, is the effect they have on the person's mental health.

For many this becomes the worst symptom of their illness, as it descends into a viscous circle as physical well being effects mental well being, and vice versa, meaning if one is off balance then chances are the other one will be too.

I'm very lucky to have friends and family around who actually believe that what I go through day to day is real, but many people don't have that support. They get told that they're faking it, attention seeking, or just lazy. Imagine breaking your leg, getting a cast on it, then your family turns and says that to you. The effects on that person's mental well being takes a long time to process and ever forget. Comments like that create a feeling of worthlessness, and a burden on that person, not to mention the loneliness it creates by not being able to share their feelings without fear of being looked down on. The frustration built up in that person will translate to physical pain. Don't ask how, we just know it does.

Depression and anxiety come hand in hand with many of these illnesses, we expect it, however, it doesn't make it any easier to deal with. Speaking personally my anxiety is mainly caused by over stimulation of the senses (loud noises, bright lights, crowds, extremes of temperature etc.) as Fibromyalgia is neurological, however it will always feel more prevalent if there is something on my mind.

A huge amount of anxiety comes from worrying about what other people think of you, whether that's strangers you'll never see again, Doctors, or family members who don't make an effort to understand. For example; what strangers can see is a healthy-looking woman getting on a bus to go two minutes down the street and get off again, but what they won't ever know is how much pain and energy its saved that woman for the day. The saying 'don't judge a book by its cover' is a very poignant one when it comes to invisible illness, so if someone has the brass neck to tell you that they're suffering, then please don't look them up and down and say "well you look alright." You wouldn't dare say that to someone who has just told you they have a mental illness would you?

I'm sure a lot of people reading this, whether you suffer from a chronic illness or not, know what depression first hand is, so you know it's not just feeling sad and crying a lot; it's not wanting to get out of bed, not being able to shift the invisible cloud that is hanging over your head, it's feeling worthless to everyone, it's not being able to explain why you feel this way. A lot of painkillers, muscles relaxants, and steroids that are prescribed also amplify these symptoms.

Fatigue is another big symptom, and if you've never had it then it'll be hard to grasp just how different it is from being 'tired'. It can't be fixed with an early night or a Redbull, so please don't suggest it. Fatigue is connected with the bodies thyroid function, iron levels, vitamin B12, so most people can be helped with treatment, however, it's the lack of understanding around how much energy completing simple tasks take. The spoon theory is a metaphor used to help people understand.

There's a financial burden too, having to reduce your hours due to pain and exhaustion makes you feel awful. It makes you worry about money and applying for personal independence payment is a lot harder than people think. The huge form you have to fill in only asks about the physical help you receive on a day to day basis, it doesn't even ask how much you as an individual have to spend (with your own money) on numerous prescriptions a month, treatments, CBD, vitamins, transport to places you could walk to on a good day etc. It's a catch 22, you need to work to get the money to treat your condition, but working a normal 9-5 for a lot of sufferers can leave them bed-ridden through a flare up.

But going back to emotional and mental effects, having to reduce your hours/take days off/quit your job—you feel like you've let your manager down, you worry in case people don't believe you or think less of you for it. I once had to ring in work at one in the morning, crying my eyes out to the poor lad on the other side of the phone because I couldn't come in for my shift that morning. I could barely move yet I had to be convinced that I wasn't well enough to go into work. The only thing that stopped me from ringing in was the fear that I would be accused of faking it. And the day after that's EXACTLY what happened. I was accused of using my condition to get a day off. For once I didn't let this lie and actually fought back yet it still upset me hugely for the next couple of days. I understand that because we don't have a limp or 'disabled' written on our foreheads that people can be insensitive sometimes, and not intend to hurt us but this was anger at the fact I put my own well-being before a four hour shift.

So in conclusion sympathy is a strange one, we'd much prefer your understanding. Taking 5-10 minutes just to search online the condition a person has will leave that person with a huge amount of relief that;

  1. you believe them,
  2. that you take an interest and
  3. the fact that you're willing to help in anyway you can with that person's well-being.

Or even ask the person themselves, it doesn't take much and more than usual they'll be all too happy to explain symptoms/patterns/sources of pain etc.


Melissa Stafford

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