One of the things I find most difficult about living with a chronic illness is cancelling social engagements. Before chronic illness I was a very reliable person when it came to making plans and sticking to them.
Chronic illness has made me this unreliable person who might cancel plans an hour before or rearrange plans a dozen times. The most important thing I try to get across to friends and family is that I’m not trying to be difficult, I’m not cancelling because I can’t be bothered or don’t want to meet up. Sometimes I wait until an hour before to cancel because I’m praying and hoping my body will just cooperate and allow me to socialise and be a normal 26 year old.
I had plans to see my sister yesterday and she was going to do my nails and I was looking forward to it! I woke up exhausted as usual but hoping some energy would appear from anywhere. I got dressed, I ate breakfast and did normal things about the house. An hour before I was due to leave, my body just switched off. I hate that about M.E, one minute my body is coping and managing my fatigue and then it just switches off and all I can do is go to bed because I don’t have the energy to stand up for more than 5 minutes or even lift my own arms and head.
Then comes the difficult part which is letting the other person know I’m not well enough to meet. I try to get across how disappointed I am in myself but it always falls flat and feels like I’m making excuses. I feel like I’ve let my friends and family down and I hate it. I hate feeling like I’ve let someone down and it affects my mood so much and is one of the main triggers for my depression.
Eventually I just stop getting invited to socialise and it’s both understandable and devastating because I want to see my friends and family but my body betrays me. I see pictures online of all my friends meeting up and feel sad that I wasn’t invited but also I expect it because why bother inviting someone who is going to cancel 90% of the time. It’s a very isolating and lonely experience.
I wish people could experience just one day in my body, so they’d understand the strength and exertion that goes into just doing basic things like getting dressed and taking a bath. I wish people would understand that I don’t cancel because I’m a bad friend or because I can’t be bothered; but because my body is too exhausted to leave the house.
It’s inevitable that I feel guilt for being so unreliable and that guilt is like poison; it infects the brain and makes me feel worthless and hopeless. I can only hope that my friends and family take a minute to think about how cancelling plans affects me and how disappointing it is to be stuck in bed instead of being out, socialising ad enjoying myself.
It’s a very confusing and worrying time right now and for those of us who suffer with anxiety; it’s terrifying. One of the latest things to affect my anxiety is the use of masks in public.
I think wearing a mask is a simple selfless act, it protects others and minimises the spread of illness. I agree that the majority of people should wear a mask. But where as it’s a simple act for a majority; it can be a distressing act for a minority and I feel that this should be understood and accepted.
I walk into a shop without a mask and although I look young, physically healthy and capable to the store staff; I suffer with autonomic dysfunctional which causes me to breathe difunctionally; I hyperventilate especially in situations of anxiety. As soon as I enter I’m questioned about my lack of mask and I explain myself, feeling like an imposter. As a person with social anxiety this is deeply distressing to me and as a person with a physical invisible illness, it’s deflating having to explain my illness and prove I have an illness despite my physical appearance. But the most distressing feeling comes from moving around the store, being glared at by other customers questioning why I can get away without wearing a mask like I’m committing a selfish and malicious act when in reality I’m just trying to do my shopping without making myself ill. The looks from other people are the most hurtful act as their judgement makes me feel like a disappointment, like a criminal.
Now, I have a mask and I wear it if I go out but when my symptoms flare up then I can either remove the mask or potentially pass out in front of everyone. I make myself wear a mask because the reality is, I’m too scared to go through the experience of explaining myself. My anxiety forces me to wear a mask just to avoid the judgemental glares and questions that will no doubt drown me if I choose not to wear a mask. But I watch people like myself, with an invisible illness trying to explain themselves and although in some cases they are treated fairly, the majority of the time they are asked for proof; they are made to prove their illness to a person who has no medical training, to a person silently judging them and making them feel uncomfortable.
I don’t go out anymore. For me, wearing a mask with my POTS and dysfunctional breathing causes my heart rate to rocket, I begin to sweat profusely and hyperventilate. This leads to dizziness, vision disturbance and I begin to black out. Instead of forcing myself to wear a mask and make myself ill I stay at home and avoid going out. I avoid it because the anxiety of potentially having to prove I suffer with a life-limiting illness is so distressing to me; I can’t even consider facing it. Before Covid, I’ve had to explain my illness and prove myself but the idea of doing so, just to go outdoors now is a horrible feeling.
The point of this post is to implore people to be less judgemental and kinder to those who cannot wear a mask. Of course, there are people who abuse the exemption for selfish reasons but you can’t treat everyone as if this is what they are trying to do. There are those of us who have genuine reasons for not wearing a mask and our chronic illnesses make our lives difficult enough without judgemental remarks and questioning. It’s a worrying and unprecedented time right now and we all need to think of others and be kinder and more understanding.
Well, it’s been a while since I last posted anything. I wish I could say it was due to leading an exciting and active life but unfortunately the opposite is true. My M.E has taken charge of my life once again and I’ve been in a state of exhaustion and pain for months. As if that wasn’t enough, a whole range of new symptoms seems to creep upon me. I’ve been suffering with a very high heart rate during any activity and blacking out when walking and exercising, as well as terribly high blood pressure, sweating episodes and dizzy spells which attack me whenever I stand up or move. It’s been a hard and emotionally tough time trying to understand why my body feels I need more symptoms to cope with.
I’m lucky that I have a good GP and as soon as I mentioned my new symptoms she did some ECG tests and blood pressure monitoring which seems to point to me having POTS so I’m currently waiting to have more specialised tests with a cardiologist but due to Covid-19 this could be a long wait. Meanwhile I’m left in a limbo where I can’t go a day without feeling physically unwell and where my heart rate seems to think it’s running a marathon when I’m just walking to another room.
Lockdown has been a rather strange experience for me and I expect for anyone with a chronic illness. It seems the whole world has been confined to their homes and discovered the mental and physical consequences of isolation. Where as, those of us with chronic illnesses have just coped as we usually do being housebound and having limited outside experiences. It definitely gave my parents a new perspective on my illness. They’ve always been supportive and understanding but having experienced the isolation and confinement of lockdown has opened their eyes to the life I live being stuck indoors so much and going long stretches without seeing friends.
Hopefully something good will come out of this lockdown experience in terms of understanding chronic illness. I hope that more people will understand the loneliness and isolation we feel and be less judgemental.
I hope to return to writing regularly again. If only to vent my frustrations and discuss my worries and experiences.