Since I started blogging about health, all those many moons ago, I’ve observed and responded to a lot of emotional reactions to the topics I’ve discussed. Many times the blogs/videos have led to hundreds of others sharing personal stories because they relate and sympathise, or because they want to be a vocal part of a supportive community, and sometimes it has led to people offering up different opinion and intelligent debate. However, one of the most prevalent and unhelpful reaction is the one that focuses on ‘who has it worse’, almost as if it’s a competition about who is the ill-est, and not in that cool hip-hop way.
While I can completely understand why it occurs, and why it does so with such regularity, it doesn’t make it any less unhelpful to the hope most of us have in terms of making life easier for those with health issues, both temporary and chronic.
Surely we must try to focus our energy, which in a lot of cases is very limited, on the things that will make a difference to how society/government/people of power acknowledge, understand, deal and help people who suffer with illness, whatever severity level and health category it falls into.
And severity of illness, or the conditions people have, is something we should consider too. With some illnesses it may be slightly easier to quantify because you can see test results which may reveal how progressed it is, or how big the tumour is for example, but even then it doesn’t mean everyone’s body is going to react the same way to it, or in turn how it/they’ll respond to the treatment.
If you’ve been asked to fill out one of the forms at the doctor regarding your mental health, you’ll know how vague the forms feel, and how much room for for personal intricacies there are with illnesses such as Depression, which are completely omitted from the glaringly insufficient multiple choice options.
If we go really simplistic with this… Everyone has different pain thresholds, so someone might be categorised as less severe, or as having a more mild case, but there’s a chance the pain or discomfort they feel could be similar or worse than those considered to have a ‘worse’ case of the given illness according to the scale the doctor may use. Someone might have one symptom that’s extremely severe, with the rest that are there but fairly manageable. Someone else might have a number of symptoms that would be considered fairly bad, but none considered as severe as the aforementioned person. Who has it worse in this case, the person that has one symptom of the illness that is at the most problematic and painful end of the spectrum, or the person who has lots of symptoms that fit into the middle section of the scale? What about someone that constantly symptomatic on a moderate level, compared to someone that has it severely, but intermittently? Also is it mentally more difficult to have consistent illness, or constant back and forth from wellness to illness?
How do we decide which symptom is worse to have? For instance with illnesses like Chronic Fatigue Syndrome where there is a huge list of symptoms that you may or may not have, some people ticking all the boxes, others experiencing just a few, other experience some only some of the time. Would you say someone who suffers with very bad brain fog and light sensitivity has it better or worse than someone that deals with constant pain in their joints and muscles? What if you compare someone who has violent IBS symptoms and an inability to enjoy meals freely due to allergies, to another sufferer who doesn’t have any of those issues but suffers with frequent dizziness and fainting ? It’s impossible to say, and more importantly pointless unless you are a medical practitioner trying to decipher the most appropriate treatment and cause of action. Should how the particular list of symptoms that patient has effects their daily life be considered? For instance, if the main symptom is muscle fatigue should it be considered a worse illness for a sportsman or someone who stands up all day in a retail job, than for someone that sits at their desk in an office? Tricky isn’t it?
If we delve deeper into this on a more psychological level, does the type of person they are and the dreams and hopes they had effect how much sympathy they should get or effect how bad we think things are for them? For instance is it worse for someone who was extremely ambitious, with lots of grand dreams and goals to succumb to a illness like this, than someone who was fairly inactive who didn’t have any big career, life or travels goals? Is it worse if a mum with three kids to look after falls ill with M.E, or for a formerly energetic teenager who is set to miss out on the fun of her twenties? I’m playing devil advocate here of course, but I think it’s interesting to consider these things when highlighting the competitive reactions I’ve witnessed in response to people talking of their health.
I saw many people writing less than supportive comments in response to Lady Gaga’s tour cancellations. Instead of warmth and encouragement, some fellow sufferers felt that her fame and fortune somehow omitted her from any sympathies. Some showing bitterness towards the fact that her money would allow her the best treatment, that most normal folk wouldn’t have access to. Of course she will seek the best help she can, fame doesn’t diminish any of the pain or effects that someone with Fibromyalgia has, and who wouldn’t want to elevate that if at all possible? I have no doubts that due to the pressures she has, as someone with a profile, with commitments effecting millions of fans and countless employees, that she has pushed herself too far on countless occasions. It’s hard enough knowing the impact your illness has on partners, kids, friends and loved ones, imagine the burden of knowing that prioritising your health could upset millions of people that have contributed to your success. On top of that, as a celebrity she will also have the pressure of being spokesperson for chronic illness, someone relied upon to force change. I actually feel very stressed and sad for her!
While I don’t want to do anything to bolster the notion that illnesses like this are psychological or ‘in our heads’, there’s no doubting that mental health can effect our ability to cope with them. Depression and anxiety often comes hand in hand with these illnesses (whether it was present before, or worsened due to the impact of the illness on the person’s life) and that can have a knock-on effect on our abilities to sleep, and our strength and ability to attempt to push through and try and live out some aspect of normality.
There may be two people with the exact same physical symptoms, same amount of pain, same level of fatigue, but one might have decide to push through and work through the pain (rightly to wrongly) and another who may decide to rest maybe because they don’t have the mental strength to attempt to push through the pain, or who has an emotional barrier that has built up because of the illness, or because they’ve done research or received medical advice that tells them it’s not sensible to do so. Of course there are many people who don’t have a choice, who are bed-bound, who however stubborn or mentally strong they are, could no way do the things that those with more moderate or mild symptoms could/can. But there’s definitely going to be cases where people with the same level of bad health will react very differently to it, due to the way they are or how they think, or how they are choosing to deal with the illness in terms of treatment.
I guess one reason to quantify severity of illness is for things like PIP benefits. It’s fairly obvious that those that can’t get our of bed most days or for long periods of time should get financial help as they are simply and categorically unable to work to earn money. But should where they live effect how much they get? if they live in an expensive area, where rent and cost of living is higher should they get more than someone who lives in a more affordable area? What if they had a very high paid job before they fell ill so their bills are higher because they used to bring enough money in to afford their home and accompanying costs? There’s a whole host of ‘what if’s’ that makes the amount someone should get a far more complex issue. What about those people that invested thousands of pounds studying or gaining qualifications in an industry they are not well enough to work in anymore, and now unable to make the living they envisioned would end up paying back the debt for investment? What if they’re well enough to do some work when they’re feeling well enough, but can’t find a job that allows the flexibility needed to work round their unpredictable illness? (this is my issue).
Unfortunately because the current system is extremely flawed, if not completely useless when used in conjunction with chronic or changeable illnesses, this has lead to frustration, contempt and resentment among the ill – which ends up not just being directed to the government and the healthcare system, but to others seeking help (particularly if they’re viewed as less ill and therefore less worthy of help). It’s created this competitive and resentful feeling because we know how limited the help is, and the people that feel their conditions are worse or more in need of help, want and need to ensure they’re the ones that get that limited help. Anyone that seems to have it better than them who is seeking out this limited help is therefore being unfair (and a threat to their personal cause). But the truth it, on the most part at least, it isn’t them being unfair, it’s the system being unfit and unfair . Just because they don’t have it as bad as you doesn’t mean the life they have is what it should be, or that they don’t need help too. You/We all deserve help, and you/we all deserve better.
Papers like the Daily Mail love to post stories about benefit cheats, so we’ve become a very cynical nation regarding the genuine nature of peoples claims, but we just have assume that most people are hard working people wanting to provide a decent life for themselves and their families, and that for many this has been a final route they hoped they’d never have to go down. We need to have different protocol, systems and payouts in place to ensure people of all different situations, severity’s, and with unique life intricacies, are able to live the life they deserve.
I’ve seen people make those who accept Disability payment feel bad for going on a holiday. I personally want to see as many people as possible with disabilities find themselves in a position where it’s financially viable as well as doable on a health level to enjoy a break. This is considered a normal right for the ‘well’ or ‘able’ so it doesn’t seem fair that they shouldn’t be allowed these moment of joy too, particularly as in a lot of cases they could reap benefits (physical and mental) from doing so. If I see someone who is on Disability payment at a festival I try not to assume that they’re taking advantage of the system or doing anything naughty, instead I think that perhaps events are making more of an effort to make these things possible, and comfortable, for those that have special health needs. Perhaps the person has been putting money aside for a while to make it financially possible, perhaps because of the thrill they will get out of it they are doing it despite the possible impact on health. What I’m saying is that cynicism shouldn’t be the reflex response.
I remember when I was at school I felt a bit annoyed that my friends, the ones who were on benefits, were the ones with the latest expensive trainers, the most up to date computer console, Sky TV, and were having regular trips to McDonalds or Pizza Hut, while I had fake versions, hand me downs, and Mcdonald’s was something I did once a year on my birthday. But now I’m a bit older I see that it’s not a black and white thing. You never know how that particular family has budgeted. Maybe they haven’t splashed their benefits on so called luxury items, but put some money aside for the last few months to be able to give the child that treat (the Playstation). Perhaps they’ve sacrificed some of their own food budget so their kids can get the trainers that will make them feel cool and like the other kids at school. Perhaps there’s some really awful stuff going on at home, and having SKY TV makes it more manageable for the overstretched mum who is struggling with ill health for example. My point is that unless we are in their shoes we never know the full story, and it’s very sad if our default reaction is one of assuming the worst of fellow humans.
Rather than arguing about who is more worthy or help when it comes to seeking out financial supplements due to to ill health, we need to fuel a change in the system so that everyone who needs help can get it. We need to force a change so that those people get the correct level and amount of help, and more importantly the right type of help.
If they’re worried about how those with mild/moderate people are spending the benefits, worrying that the funds might simply be supplementing a particular lifestyle, why not find out what that say they need help with and offer specific help in those areas. If they could find me a job that was completely flexible in my local area that would allow for the days/week where I’m not doing so well then I’d be open to that kind of help for instance. For people that struggle to cook for themselves or stand for long periods of time, healthy microwaveable meals could be paid for or delivered. I’m just pulling these ideas out of the sky without proper thought or dissection, but you know what I mean – there are ways to ensure the benefits are specific, applicable, fair, appropriate, and with limited room for abuse of the system. I’d like to be able to give my ageing parents a few days off from driving for instance, so some sort of vouchers that can only be used in taxis for instance. Money towards the Magnesium supplements or Osteopath appointments perhaps.
So should I, at a mild/moderate level of ill health, but who suffers with fainting and unpredictable toilet issues, attempt a part or full time job again, knowing I will likely feel very ill, potentially make my condition worse or have to quit in a few weeks or months time? Should I drive even though fatigue and brain fog makes me feel scared to do so, and potentially risk mine and others lives because I don’t want to rely on my pensioner parents as my personal taxi drivers because I can’t afford to get actual taxis? Should I have to push myself to the point of crying when I’m commuting or carrying out work because I need/want to bring in enough money to allow me to pay to do normal things with my more well friends? Or should I be able to rest up when needed and not feel, due to lack of an alternative, to push myself to a level that could potentially make me more ill, and rely more on NHS funding?
No, I’m not bed bound all the time, but do I need more help than my friends in full time work, absolutely yes.
As Ive said before I’m a hugely ambitious person who worked her butt off to get First Class Degree and work unpaid doing internships, and always had huge career goals. I know there’s many other people who suffer with mild -severe illness who are/were the same, and too couldn’t be further from the lazy scrounger stereotype. Applying for financial help for me (and for many others) was a last resort, having attempted different careers that I hoped would deliver enough money while being flexible to my health needs. I didn’t and never wanted to receive money if to meant/means someone in a ‘worse’ situation would lose out as a result, I was just looking for the help someone of my situation should be entitled to have.
So guys. Let’s put our poorly heads together and try and formulate some REAL things we can put to people in power. Ways to make benefits assessments applicable to each very individual illness and situation. Solutions which are feasible that could genuinely make the lives of those with illnesses feel more normal and far less stressful. Ways the assessment could be less daunting and demoralising, but most importantly way we could at last make them at the very least, fair.
While we do the job the health secretary and his team should be doing, and try to formulate some helpful protocol and systems, lets not assume the worst of people. Let’s not be suspicious or skeptical basing our reaction on a glimmer into people’s lives from what you see at the school gate, what you see on the internet, or even what you see in person (that same person may be very different at home). Lets not make people feel bad or ungrateful for being sad or stressed even if their situation seems infinitely better than yours in comparison. Let’s not allow these horrible conditions to turn us in to bitter and resentful humans. Let’s try to channel the empathic element of our personality that an illness can enhance, to make everyone who is struggling feel both supported and worthy of that support. Remember if someone appears to be coping better it doesn’t mean they are. Remember if someone is doing lots of things, it doesn’t necessarily mean they should be.
Together, we are more powerful. So if you are more ill than me (in your eyes or the eyes of the system), please don’t see me as pest, or someone who isn’t grateful for all that their body allows them to do. Please see me as an ally, one that wants exactly what you want. I will use use the extra energy I may have to make the changes we ALL want and need. We’re not in competition, we’re a team….and soon, hopefully one that will reap the help of a winning system.