Some times blog posts are triggered by life events other times they are triggered by something I have read. Today’s blog post was inspired by an article that was shared online by one of my friends from Psychology Today “Six common misconceptions about the chronically ill” by Toni Bernhard J.D. I have faced all of them at some time or another. The article really got me thinking about the points the author raised and there were particular ones that really resonated with me.

As the author states one of the first misconceptions the chronically ill face is that we don’t all look sick. I have had people say to me “you are looking really well”, when I know that when I last looked in the mirror I was doing an impersonation of Casper the friendly ghost. When I first got ill this really used to annoy the hell out of me. As time has progressed I have decided to not react to statements such as these, after all there have been occasions when my husband has said the exact same thing. I may have the energy to kill him but disposing of his body would be a real nuisance!

Many people don’t “see” how sick I am. They don’t realise the effort it has taken to get out of my bed let alone get dressed and washed. They weren’t with me as I took a mountain of medication to ensure there was no breakthrough pain and lets face it unless you know someone really, really well (and although my husband does know me well, he doesn’t always “see”) it is usually only my mother that says to me “Oh you look awful, are you OK?”. She can also tell in my voice when I ring her in the morning how I am doing and will keep questioning me until I admit I feel awful. She can see immediately if I am having a rotten day and I am dosed up to the eyeballs. So I can’t really get mad at people when they say “You are looking well”. It does irritate me but I have learnt I need to use my energy in more constructive ways.

What is hard about people saying that you look well is the inherent belief that if you look well you must be feeling well. A long time ago a lady, who worked for me and has since sadly passed away, came in shopping whilst she was off work undergoing chemotherapy. Everyone was saying to her how well she looked. I could see she was finding this a little hard to deal with. I understood enough to know that chemo is no cake walk and I stopped to chat with her. As we stood and chatted another member of staff came up and said how well she looked. Sheila just smiled and said thank you. 

Once they were out of earshot she turned to me and said ” I wish they realised I am puking my guts up for hours each day. It’s the bloody chemo that’s giving me a flushed face, that makes me look like I am OK and not dying”. I held her arm and told her that it was just so lovely to see her and that we were all thinking of her. I had to hold back the tears when she told me she was losing her battle against the cancer that had returned for the 3rd time. The moral of the story is no matter how good you think someone looks when they are chronically sick, you have no idea what they are facing. Choose your words carefully.

The concept of radical resting or #3 on the authors list is not a new concept for me and it is often the one that is most misunderstood by others. A few years ago I was resting for an event that I was desperate to attend. I knew that attending this event would wipe me out physically and mentally for many weeks afterwards but it was something I really wanted to do. Unfortunately the event clashed with a friends 30th Birthday meal. The friendship had been on the wane for quite some time at this point and I knew that she wouldn’t have thought about the disabled access at the restaurant and I would be sat with a group of people I didn’t know. 

I had booked and paid for the event  4 months in advance, well before she had decided what she was doing for her birthday. The friend knew that I was going but couldn’t understand why if I was resting that I wouldn’t be able to attend her function on the following evening. She was of the opinion that if I could attend one that I could attend the other. After all I had been on strict bed rest for a month prior. I kept explaining over and over again but my explanations fell on deaf ears. I felt like I was being emotionally blackmailed as every few days leading up to her birthday meal she was sending out a text message to all that were invited to confirm their attendance so that she could book the restaurant. As I had already explained my position I didn’t understand why I was still being included in the group text messages. It hurt me that she refused to accept that despite my radical resting I wouldn’t magically be better.

When you are chronically sick spontaneous events rarely happen. Outings require such meticulous planning with resting, medications ordered, transport arranged and schedules cleared to allow for resting afterwards that spontaneity has to take a back seat. It irritates me that people assume that with a few hours in bed I am good to go, it doesn’t work like that. I have rested for weeks before a planned event and still had to cancel at the last-minute. I don’t decide whether my body is going to cooperate, it does. It is extremely frustrating to have rested and organised everything so that I can attend an event only to find on the day I am too sick. It makes me feel robbed, not only of the chance of going out but also all the time I have rested to end up achieving nothing. People assume I use my illness as a cop-out so I don’t have to attend things I don’t want to. It’s true there are some events I won’t go to but I will tell the person that has invited me, I don’t use my illness in that way.

Point #4 from the article leads directly on from #3, the misconception that if a chronically sick person is enjoying themselves then they can’t be that sick (or as the author says if they are enjoying themselves they must feel ok). The problem is when people see you either out at an event or at home entertaining they don’t see the planning and resting before the event and they don’t see the consequences after the event. All they see is you looking and acting “normal”, they don’t see you surreptitiously taking extra medications because the pain has kicked in or the hot water bottle discreetly placed in the waistband of your trousers to ease the muscles spasms. If you are chronically sick and anything like me you do all you can to avoid drawing attention to yourself.

We are then disbelieved when we try to explain our illness and the way it affects us because for one night they “saw” you acting and looking normal. It’s frustrating that we are judged on the few hours we are visible in the outside world not the hours spent behind closed doors where we feel like we are slowly dying just through the intensity of the pain or the intensity of symptoms.

Back in June my husband and I held a “40 1/2 Birthday Party” so that I could socialise with people and catch up with life outside the house. What the attendees didn’t know was that if the event hadn’t been taking place in our home I would have cancelled the afternoon of the party as I felt so very ill. I soldiered on and enjoyed myself but was very ill for several weeks afterwards.

What I find especially hard to deal with is the judgement I get from within the chronically sick community. When others heard I had a party at my home I had comments made that “they were just too sick to do anything like that” the implication being I couldn’t really be that sick if I had some friends over. This was from people who know nothing of what my life is like. They are unaware of that I have a chemical toilet downstairs because I can’t manage the stairs more than a few times a day. Without the chemical toilet I would be stuck upstairs all day everyday as I need to use the loo so often. The fact that I limit the amount I walk around so that I don’t use up too much energy or that I go to bed most afternoons because I can’t cope with sitting up all day or the extra stimuli that being downstairs exposes me to. When you can’t even enjoy yourself twice a year because of the judgements of others in the chronically sick community things have gone very wrong. They are the people who know what it is like to be judged by others but are quite happy to sit in judgement of me.

The last misconception the author talks about and the one that really struck a chord with me was “Being at home all day is a dream lifestyle”. Years ago sat in the back of an ambulance a paramedic said to me “It must be great not having to go to work, get benefits and watch Jeremy Kyle all day”. I was so shocked by this I didn’t know what to say. I was also quite busy sucking on gas and air to try to get some relief from the abdominal pain I was experiencing. This statement came from a medical professional, someone who is supposed to look after the weakest and most vulnerable people when they are in need of emergency medical help. If that’s how he views the disabled then what hope do we have?

People assume not working is some sort of life of luxury, masses of free time to indulge in whatever pursuits take your fancy. Most people don’t stop working until they reach 65, I stopped working at age 34. When you are chronically sick there is no life of luxury or free time, most of your time is spent managing your condition and worrying about money. If I could have my health back I would be straight out to work. 

Being at home all day everyday is socially isolating. The friends you have at your job rapidly disappear because it becomes clear very quickly that other than the workplace you have very little in common and they have to make a physical effort to come and see you. Ask anyone who has been on maternity leave or on long-term sick leave how many people they have seen once they have been absent from the workplace and the majority will answer either no one or just staff from the Human Resources Department.

Not working either through “normal” retirement or chronic ill-health increases your risk of depression. No longer having a routine, a purpose or the sense of achievement you receive by being an active member of the workforce can lead to immense feelings of loss. I do miss my job, I miss the social interaction. There are obviously aspects I don’t miss as anyone who is working will tell you there are aspects of their job role they really don’t like.

When I left work I felt I had no purpose, that I contributed nothing to society. I still struggle with this every so often, usually when yet another medical professional has asked the dreaded question “Do you work?” I feel like I have to justify my existence being thrown on the scrap heap at 34 was hard to deal with. To cope with it I started blogging it has given me a routine and sense of purpose. 

No one would ever chose to be so sick that they couldn’t work. Obviously some people stay at home to look after children and find it socially isolating, I do appreciate that. However they have the power to change their situation. When you are too sick to leave your bed let alone leave the house your options are limited.

Not having to work because you have won the lottery is a luxury, retiring early because you are wealthy is a luxury. Having to leave work because you can no longer perform any job role is not. Being at home all day every day is not like being on “holiday” from work. It can be soul destroying. In the early days I would get up in the morning and cry because I would sit and contemplate whether or not I could handle everyday being like this until I died. I didn’t want it to be like this.  So before you decide to tell someone who is chronically sick that you would love to not have to go to work and stay at home everyday, think about it. Do you want the chronic illness that goes with it?


The Response to “Dear Norms”

My blog post Dear Norms (WordPress version here) produced a response on my blog, my The Myasthenia Kid page on Facebook, my own personal Facebook page and the comments section of both blog platforms that I could only dream about.

Although it was fantastic to receive such a response my heart was heavy reading other people’s experiences of being abused by “Norms” due to their disability. I have been very lucky to have suffered very few incidences of abuse. One of which I wrote about – Well if you’re that f**king disabled get off Facebook and take up knitting (WordPress version here). The abuse I received via social network when what had been a friendly discussion got out of control, upset me for days afterwards. I now know I had simply been trolled by someone who would not accept I had a different viewpoint from her. When she realised I couldn’t be bullied into changing my opinion she launched her vicious tirade culminating in “well if you are that f**king disabled get off Facebook and take up knitting”. 

It made my anxiety about leaving the house much worse. I do not suffer with agoraphobia but the open hostility with which the disabled are met on a daily basis, causes me anxiety if I need to leave the house for appointments etc. Due to my chronic conditions making me virtually housebound, leaving the house is a big deal. I know that it will have consequences for my health, normally a rapid deterioration. Add in the highly likely scenario of facing some sort of abuse and or discrimination, leaving the house can have self-esteem / confidence implications as well.

One response came from my sister Lucy ( who I am hoping will be a guest blogger in the next few weeks ). She also suffers from Ehlers Danlos Syndrome Hypermobility type and Dysautonomia along with other conditions she has picked up along the way. 

My sister has faced an enormous amount of hostility regarding her illness from day one. My sister was a medical conundrum back in the early 1990’s at age 14. It was just at the time that Yuppie Flu so helpfully named by the media was coming into the fore. What the papers failed to realise or accept was that the so-called Yuppie Flu was in fact a real medical illness Myalgic Encephalomyelitis or M.E for short. 

My sister was accused of faking her illness, having school phobia and medical staff tried to blame my parents for her condition implying they were both suffering from Munchausen Syndrome By Proxy. Eventually the diagnosis was settled on she had M.E or Chronic Fatigue Syndrome, which it is also unhelpfully known as. M.E and Chronic Fatigue Syndrome has about as much in common as football and Ice Hockey but I digress as usual. She was diagnosed with Ehlers Danlos Syndrome and Dysautonomia shortly after I received my diagnosis in 2011.

My sister was so ill as a child (and still is) that she needed a wheelchair both indoors and out. For two years she was confined to her bed and suffered from epileptic like seizures. These were explained away by the medical profession as psychogenic seizures, the implication being that she was putting them on. It is believed to be some form of somatoform disorder / conversion disorder. (Isn’t it funny how we have both been told that we have a psychogenic illness?) If that was the case she should have received an academy award. The medical profession may have decided she wasn’t worth their time or effort but our family GP who worked tirelessly to try to help her. She did find as a young person in a wheelchair she was accepted on the whole by society. How things have changed.

On reading my post “Dear Norms” she was compelled to comment and this is what she said;

When we took my son to the out of hours doctors recently the first thing the doctor said was, “Is that your wheelchair?” I am so f**king sick of people in the medical profession asking me that question, especially when I am not even the bloody patient.That’s like me asking an abled bodied person if that’s their legs or a transplant donors! I feel like saying, ” No. I’m just a huge fan of Little Britain and I carry car bumper stickers with me all the time so I can pimp up other folks wheelchairs.” It’s beyond stupid, yet I come under the category of “Disabled!!!” 

 I was so shocked by what Lucy said I couldn’t come up with the words to explain the outrage I felt. On talking with her she told me it happens at every medical appointment she attends with a new doctor, whether she is the patient or her son/husband is. I am left scratching my head as to what the medical relevance is to the question “is that your wheelchair?” Especially when Lucy’s five-year old son is the patient.

I regularly get the question “Can you walk?” when meeting doctors whilst using my wheelchair. I understand they want to gauge what my mobility levels are but it is a highly offensive question when again it’s not medically relevant, such as when my bladder was in spasm and I was in acute urinary retention. The explanation from doctors would be that they are trying to assess what help I will need whilst in their care. The question is so loaded that I feel that every time I answer it I am being forced to justify my using a wheelchair.

For clarification I use my wheelchair for many reasons. The first is for safety I can be incredibly unsteady on my feet causing me to fall on numerous occasions daily. I can lose my balance stood still that’s how bad my balance issues are. Another reason is that walking causes me intense pain due to the Ehlers Danlos syndrome, knees give way or dislocate, hips have a tendency to pop out more than I do and don’t get me started on the mess that is my spine. My wheelchair is also used because of my Dysautonomia, my blood pressure can drop like a stone and when that happens I tend to as well. It happens without warning. Also being upright causes my heart to beat rapidly (130bpm) and this is exhausting. Yet my explanations are met with a wry sarcastic smile, it’s as if my conditions are disbelieved. The wheelchair is obviously just for show, I am a lazy cow who doesn’t like to walk anywhere. I mean wheelchair access is just so great nothing stops me……apart from stairs, escalators, badly designed kerbs etc.

Another person commented that her ex partner had used the word “spaz”, “mong”, “retard” as a term of abuse whilst they were in a relationship. Her children are also disabled so the ex wasn’t just abusing her but her children also. This made her see red and she smacked him in the puss – her words not mine. I don’t condone violence but when backed into a corner it can be a natural reaction.

A long time friend of mine whose comments you can see on my WordPress blog described being spat at and told to get out of his wheelchair and get a job. As he says the people who did this to him, don’t know him from Adam and they fail to realise he has worked for 40 years. Unfortunately all people see is his mode of transport, a wheelchair. The chair has become in their eyes his identity and he is reduced to being a leech on society, sub-human. This man, this friend of mine who served his country, was injured in the line of duty. Is this really the way we are going to treat wounded ex-servicemen? It makes me so angry that intelligent human beings are being degraded in this way by people who consider themselves normal.

I don’t believe that you can be what most people consider “normal” to treat another human being in this way. I am so angry but I have used up my profanity allowance for the day that I can not find the words to express how I feel. 

It seems “Dear Norms” stirred up a lot of feelings for many people. It exposed me to some truly shocking and horrific personal stories. I just wish the people I was addressing in that post would realise the horrific damage they are doing by using those words and holding those attitudes. As a society we will never evolve if the disabled are seen as a drain on the country’s finances and not as human beings who have something to offer the world.

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For those of you who may have missed this I have been nominated for a WEGO Health Activist Best in Show blogging award! This is a huge deal. I need your help though. Please could you follow this link which will take you to my nominee page. All you have to do is hit the purple endorse button and leave your name and email address. Both your name and email address will stay hidden, so I won’t know who you are or will anyone else. I need as many endorsements as possible to help my blog go through to the final stage.

This is a huge honour and the stuff of dreams for me. I have had this on my wish list for the last year or so and I am finding it very surreal that I have received a nomination. Thank you to everyone who has endorsed my blog so far You Are Awesome!