One of the most frustrating things about having an invisible illness is people telling you that you look fine. I understand that it’s hard to relate to someone with an invisible illness but what isn’t acceptable is when people doubt you, when they judge you and make comments about how you should be doing more and it’s laziness not illness.
I have more than one invisible illness, I’ve suffered with depression and Anxiety for 5 years and I’ve had CFS for two years. Every day I struggle with these conditions and if that struggle isn’t enough, I have to put up with people making comments and judgements because on the outside I look like a normal person. What’s worse is the feeling that I have to prove my illness to people, that I have to give them evidence in order to get them to believe me. One of the most upsetting things for me is not being able to work and earn my own money and it’s really hurtful when people say I’m just lazy and want to live off my Fiancé for the rest of my life. I’ve worked before and before I became ill, I was an independent person who wanted to rely on only myself but illness changed me and I’m forced to live off someone else and rely on someone else to support me. I love my fiancé and I hate that he has to work and all his wages go on our bills and food before he has any for himself. I hate putting pressure on him and I hate sitting at home while he’s out working full time to provide for me.
Some people think I’m taking advantage, they think I’m lazy and using my illness as an excuse not to work and it’s really upsetting. I wish I could give people a glimpse into my day and show them what I have to go through. I wake up at 11am most mornings and all I feel is exhaustion and aches all over my body. It takes me an hour to get out of bed because a nights sleep doesn’t refresh my body and I’m still so exhausted that I’m falling back asleep, trying to move all my limbs is painful and requires all my energy, energy that I don’t have. My depression sucks my motivation and tells me to stay in bed and just die there because I’m useless. Some days the pain and fatigue is so bad that I do have to remain in bed all day and this often means no food or drink because I’m too exhausted to do anything but go to the toilet which is ensuite and near enough to get to. Most days I have to stay in pyjamas because sorting out clothes and getting changed takes too much of my energy.
If I somehow push through the pain and fatigue, I get up and I make breakfast which is usually cereal because I don’t have the energy to do much more, some days I’m too tired to even do that and I go without. I take my antidepressants, painkillers and vitamins which my Fiancé leaves out for me, the rest of my medication is locked away to stop me attempting to overdose and kill myself. By now its 1pm and all I’ve managed to do is get up and have breakfast. If it’s a good day, I’ll wipe the kitchen down, wash up and tidy the living room up, after each of these chores I have to sit down and rest for 15 minutes to get my breath back and muster the energy to carry on. Some days, all I can do is wash up and it takes all the energy I have so then I’m stuck sitting on the sofa watching awful daytime television and wishing I could be out and doing things.
At 3pm I see all the children walking home from my window and feel awful because they’ve been up since 8 and learning. By this time of day, I’m falling asleep again and need to go back to bed, this means I skip lunch. I will sleep for three hours and then my Fiancé will have to wake me up because it’s dinner time and I won’t have eaten since noon. My fiancé will have to cook because I don’t have the energy and my head feels so foggy that I will forget to take things out of the oven, or even forget to turn the oven on. My fiancé by this time has done a full days work and he’ll thank me for whatever little chore I’ve done round the house, even though it’s nothing compared to what he’s done all day.
I’ll eat dinner and spend a couple of hours watching my Fiancé playing video games, games which I used to enjoy playing but now can’t because of the pain in my wrists and hands. I’ll try to read a book which I love but a lot of the time I’m too tired and don’t have the mental energy to even do this which means I’ll end up falling asleep on the sofa. Eventually my Fiancé will wake me up and we’ll go to bed, after another dose of painkillers to knock me out. I’ll sleep for 12 hours and wake up feeling exactly the same because rest doesn’t help me.
So I don’t want to deal with people judging me because I barely have the energy to look after myself let alone stand up for myself. Their comments hurt and make my depression thrive but there is nothing I can do to alter their opinion because my illness is invisible. Even people that support and love me sometimes forget how ill I am, because they can’t see it, they think it’s easy to get over, easy to forget I am suffering. I appreciate everything my Fiancé and family do for me, I hate having to rely on them and I hate being a burden. I wish that my illness would manifest itself visually on my body so people could see and I wouldn’t have to live with the doubt and hurtful comments but it doesn’t
My illnesses are invisible but they are real and to be told I’m just lazy and don’t want to work is insulting and deeply hurtful. I shouldn’t have to prove myself, I don’t have the energy to do so. I don’t want to live like this and people insisting that I do because I’m lazy is depressing.