Wednesday, 1 April 2015

Comparing progress to others & forceful opinions in chronic illness...

Image - Tumblr via Google Images

One of the most beautiful things about life is that no two individuals on this earth are the same. This couldn't be more true when it comes to illness. My Ehlers Danlos Syndrome specialist recently said to me that she could have six people with my condition sitting in the waiting room and they would all be different within their diagnosis. Bare in mind that although we may be diagnosed with the same illness, we can be similar in our struggles, but we are not all the same case and do not have to fit into a certain box or a 'textbook fits all' scenario of what is expected in how we live and deal with our illness.

No two bodies who suffer with the same illness are identical. No one experiences the exact same pain. We all have different personalities, emotions, qualities, beliefs, abilities, thoughts, opinions, thresholds, the list is endless and extremely relevant to our individual stories in how we live and cope with our chronic illnesses. We would never be able to guess how somebody else manages to cope, juggle a certain lifestyle or live day to day with their illness because we are simply not living with their pain. Therefore, we shouldn't be scrutinised by ourselves as well as others for our abilities as individuals in our respected illnesses. There has been many times in the past where I have even compared myself to others in chronic pain. I ended up hugely doubting my achievements compared to those of others, however this was not a rational way of thinking on my part because we are all built differently.

In life we are all guilty of comparing ourselves to others. Whether that be someone in our class when we are children, our siblings or family members, our idols or those of similar age. We handle all aspects of life in different ways. We can learn and grow from our own experiences as well as the experiences of others, but at the end of the day, you are your own person and will only ever experience life through your pain and eyes. I have read many times of the dilemma in which people have felt the need to play their illness up to make it look worse in order to be taken seriously. This may be so they seem on par with someone else or so that they make others understand just how much they suffer. This never even crossed my mind to be possible or for someone to feel this helpless, but in the last year I have heard it many times. It's such a shame that those suffering with valid pain feel the need to go to these great lengths through fear of comparison but also, lack of compassion.

On the other hand, sometimes we can feel like we don't have quite the same abilities or quality of life as someone else with the same condition and feel extremely disheartened by the process. However, instead of making ourselves feel worse in the form of our focusing on our disadvantages such as, being annoyed over what we can or can not manage, that we feel we are not as ill or more ill than so and so, that we have more bad days than good, we should instead try focusing on what abilities we are not giving ourselves credit for. The smaller things that might not mean much to someone else, might mean the world to you. What we manage in life with illness is not only a great effort but an achievement in itself. I sometimes mentally don't feel satisfied on impact by what I have managed, but on reflection, I know and have to remind myself that it's actually a huge achievement for my body to cope. Only an individual can realise these personal hurdles.

I will say, the chronic illness or 'spoonie community' as it is commonly known is a mostly positive and highly supportive place. People are caring, kind, there for each other and friendships are built on the base of relating to living with chronic pain. However, in the past I have experienced opinions (which we are all rightly entitled to in life) delivered in a condescending, belittling or rude manner that almost seems like a slight dig towards others. Mostly, pushing of a lifestyle or way an individual deals with their chronic pain onto another. I'm sure it is meant kindly, online we take from things what we wish from a simple text, but people who are in a sensitive position such as chronic illness or disability can often take it the wrong way. 

Nobody knows how much an individual is struggling physically or mentally, it pains me to see people forcefully dictating to others what they should or shouldn't be doing when it's not their life. Just because one thing, treatment, medication, attitude works for one person doesn't mean it will for you. So you shouldn't be made to feel negative or any less entitled to feeling ill or your pain just because it doesn't work for or is a part of your journey at this moment in time. It is up to the individual in pain to decide what they can and cant manage. As much as they will be grateful that you care enough to suggest, its all about the delivery in how you express your thoughts. It's not just a simple case of why don't you try this or that, its maybe because the individual in pain doesn't feel physically or mentally able to at this moment in time. They are not being negative, they are just trying to cope with how they see fit.

For instance, a brisk walk might feel like it works wonders to one person, however for someone else it might feel like they are causing more pain or damage to a broken body. Some may think stretching helps them have more stability, some may not. Other examples I see being dictated as 'key elements' in progressing your health range from hydrotherapy to dietary changes. While these resources are available, I think its up to the individual who actually lives in pain to decide what they can and can not do, what they want to and don't want to try. I know that those suggesting probably want to improve the quality of life for the person who is ill, however being too forceful in what they deem 'correct' makes those suffering with illness not willing to be as open minded to these options. 

Something those with chronic illness struggle with is receiving comments from those who do not live with chronic illness but assume that something will 'cure them'. When I hear people saying that their parents, friends or colleagues think they don't try hard enough or push themselves enough I often wonder if those making the comments take into consideration all aspects of their illness, or if they are implying a standard one remedy must fix all type of opinion. The added extras being things such as, extreme chronic fatigue, physical chronic pain, dizziness, being able to stand up without fainting and much more. There are many different various symptoms in an illness, with some affecting an individual and some not. We are all individual and will all react differently to our hurdles. 

In the past I have even received similar comments myself that stem from good intentions but are just delivered completely wrong. "You need to try harder, you need to help yourself a bit more, if I was ill I would try anything to get better". These comments might be intended to give a little push in order to change or improve your quality of life, however in incurable illnesses and disabilities, sometimes this can feel more frustrating to hear because we know the inevitable outcome. Implying that we are not helping ourselves when you don't live with the condition is wrong. It's nice that some care enough to be emotionally invested in our pain, however it's easier to push as someone from the outside looking in than it is to be the person living in the pain.

It is still positive to offer support and suggestions if you are in the same boat. Sometimes, its what people really need to hear. If you find hope in an outlet, do share what worked for you but be conscious in the delivery you give without sounding too forceful. By pushing an option onto someone based on the fact that it gave you positive results, it can often make an individual feel like they are failing if they don't gain the same benefit. There's many trial and error attributes with chronic illness and only the individual can find the solution in what will help aspects of their symptoms. For instance my own trial and error has come in the form of, my diet being constantly changed since 13 in hopes of lessening some of my stomach symptoms, finding great difficulty and lack of progress in my physio sessions in the past, swimming pools having a very bad affect on my autonomic dysregulations. However I do understand that the options above that haven't worked for me, may well have a rather positive effect on many others. In illness you feel a loss of control, of your body, your situation and your life. When people with illness imply they don't want to try at the moment, its not that they are completely shutting the door on that option. It's trying to express that they will look into trying these options but on their own terms in time.

In some situations, some of those with chronic illness do not have a support system at home or around them. Illness is terribly isolating and these individuals need to feel empowered and like they have someone on their team. I feel so grateful when someone feels courageous and willing enough to share their pain, troubles or ask me for advice within their journey with chronic illness. There is no feeling like being trusted and supported whole hearted by a person. Everyone's battle with illness is different, everyone has different strengths and weaknesses, everyone is unique in their struggle. Different people will have different thresholds and we should only try to lift each other up. Praise being a huge focus, not only to each other but ourselves for our achievements, big or small and continue to inspire without belittling or boasting

There really is no right way of dealing with chronic health problems, there is no manual you are handed to tell you what you should or shouldn't be doing. Illness is unpredictable, it will never be a textbook fits all type of scenario, what works for one won't necessarily work for another and that's OK. As good and as positive as it is to continue sharing the available outlets of pain relief to exercises, coping mechanisms to positive thinking, YOU are the boss of your own journey. Build your own blocks, set attainable goals and continue to be open minded to finding ways in which you will hopefully progress and help your symptoms. 



  1. Very true and recognizable! I get very often 'suggestions' that I know won't help me. When people say I have to eat super foods or do something like that, I often get the feeling they don't understand how serious my illness is.
    When I say to people that my illness is incurable, I often got the response that 'I shouldn't give up'. As if my illness is curable, but the problem is just me who is giving up.
    Nothing could be farther from the truth. I keep looking for treatments that can improve my health and comfort, but it's only realistic to recognize that chances are close to zero that I will ever be cured. That doesn't mean I'm going to throw my life away. It only means that I'm going to try to make the best of my life, being a person who is chronically ill.
    It's like the quote someone (I think it was you :p) posted on twitter from Micheal J Fox: Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.

  2. Great information, Nancy. Having a support system is very important when dealing with a chronic illness. It is also important to realize, like you mentioned, that no two people are the same and everyone deals with their own unique problems in different ways. Thank you for sharing!