Chronic Behaviours 


It has become very clear to me that just because someone is chronically ill they don’t stop being human, and we still have all the human flaws and weaknesses that anyone else has in life. 

There is still a lot of difficult behaviors out there in the chronic world and you may even encounter them from time to time; for example… 

The chronic clique 

There are so many small support groups out there for the various illnesses and diseases that there begins to develop cliques which can often feel unwelcoming to strangers and exclusionary. Even those groups who share similar challenges and struggles. 

These cliques, once formed, can be impenetrable and can isolate people who are already struggling with feelings of rejection and isolation. 

Beware of the Chronic Cliques! 

Chronic Competitiveness 

This describes a person who views their illness or disease as a competiton and other chronics as potential competitors. They must always be sicker, have more pain, be on more medications or be in a worse position than all their peers. 

Even if they are genuinely in difficult positions and struggling, this behavior only achieves distance and helps to push others away. 

We may be competitive people by nature and it may have even helped us in our careers or sporting pursuits but does it have a place within chronic issues? Does it help those who are struggling and suffering? I don’t believe so. 

No matter how difficult or effected your life has become it is better to try not to turn it into a competition with other chronic fighters. We are all doing our best after all. 

I have seen some shocking online fights and shaming posts which does not reflect well on those people concerned or the entire chronic community. I always try to think the best of people and remember that they may have some other mental health issues as well as pain and discomfort, but there is never a good reason to expose the entire world to nasty or belittling comments. 

Chronic Overachieving 

We have all seen the pictures and heard the stories from the chronic overachiever. You know the ones that have climbed mountains, swam oceans, single handedly saved a small country, looks like a super model and should be on the cover of Time magazine as the “most accomplished chronic sufferer. Ever”

You can’t help but see these people and feel both happy for them and then completely wretched about yourself! 

… It can make others feel like they are failing at being chronically ill. 

I don’t believe that this is helpful to the overall community of it is deliberately flaunted or used in a negative way. Our achievements are special and mean a lot to us personally, but to strangers who don’t know our intentions it can feel very isolating and demoralizing. 

Perhaps when we interact with our chronic brothers and sisters we could be mindful of how they may interpret and feel when they are struggling? Do we need to remind the world of how accomplished we are all the time? Especially when others are having a difficult time? 

Chronic Incompatibility 

Just because you happen to have the same illness or similar diseases as someone else it still doesn’t mean you are well matched or destined to be BFFs. 

In life some people are just not meant to be friends or to bond. In fact, some people can even take a disliking to each other. It’s normal, it’s human and it isn’t anything to punish ourselves about. You just aren’t compatible. As in any other social situation it is best to be cordial and move on. 

We aren’t required to please everyone or be everyone’s friend, even if we are hoping to make some real connections. It is much easier to try to be respectful to others and enjoy those who you may find a deeper connection with. 

Even online it takes time to get to know someone and even longer to become close. There is no getting around this rule. However the loss of an online friend can still sting and hurt as much as a real friendship so try and be wise with your loyalty and feelings. It still takes time. 

Sometimes we try hard to make a lot of chronic friends quickly because we have lost so many healthier friends* (*able bodied friends) but friendships doesn’t always work like that. People are still people, health or not, and it is better to have a much smaller group of quality connections than cling to difficult and taxing ones. 

Chronic Misconceptions

Often we will meet chronic friends online since many of us are unable to physically interact with the world anymore. An important thing that I have learned to remember is that even though you may share a painful illness and have shared deeply personal and painful discussions with the group, the fact remains that they don’t really know you. That takes years and years. I am still discovering friendships I have had for over 30 years! 

You may share pictures, personal anecdotes and emotions but they still won’t know who you are when you turn your computer off or how your life really is. 

Therefore I advise caution when overinvesting in what an online person says or how they act towards you. Enjoy the connection for what it is. For what it truly is. 

They may also be depressed, they may have other issues that you are not aware of or other factors in their lives driving their feelings and actions. Things that you can’t know or may never know so we can’t always take things personally… other chronics are always experiencing  their own realities. 

As a blogger people may assume they know me or who I am based on something I have written, or they may even misinterpret my actions or words but that doesn’t mean they have the true and complete story of me. We are all deep and complex human beings. The only one who can ever truly know us is ourselves. 

Chronic Overuse 

This is a suggestion about putting too much time and investing too much of your life into any one chronic group or online community. Sometimes they can take too much energy and time that could be better used in other aspects of your physical and emotional wellbeing. For example, meditation, contemplation and relaxation.  

If you feel compelled or required to be engaged with groups and activities to the exclusion of everything else in life than perhaps it has become not as healthy or useful to your life. 

We are now a world of social media addiction and when you are bedridden and vulnerable we may tend to rely too heavily on social media to the exclusion of all other things. Music and reading and time spent alone is still as healthy as  viewing every post or picture that drifts across social media. We have other forms of validation available to us that should not be forgotten. 

When liking someone’s post becomes more important than liking yourself and your reality than perhaps we should reexamine our priorities. 

Gentle hugs, 

Trish. 

Mirror Mirror On The Wall


Mirror, mirror on the wall… why am I never happy with you at all? 

I wish I could take credit for all of this post but it took a friend to help me open my eyes wider and start opening up. Eyes that had been closed for so long. So very, very long. She has my thanks for the push but I know the hard work will have to be mine. 

I read a post today from a friend who had posted about how she felt about herself since she had become ill. Her body has changed and she wasn’t as happy with her looks anymore. What a brave soul she is! … So many of us think and feel it but few of us admit to it. Not publicly anyway. 

When illness steps in and takes over we will fight so hard to keep control. We don’t want everything stripped away and we feel so deeply hurt when we can’t stop everything that is happening to us. Especially the way we look and feel about ourselves. 

As I read her post I was immediately feeling for her and me at the same time. You could replace her words with my own. I admit that I dont really know all her story, but I do know mine. 

Even from a young age I was taught to never be happy with how I looked. I learned to shy from cameras and accept that I would never be thought of as attractive. So … to this day I have very few pictures of the first 30 years of my life! I can count all of them on one hand!! … Even including baby pictures. 

I was always told that I was too plain, too fat, too shy, too (insert adjective) … and therefore I had a very poor self esteem and body image. The only things I felt I had going for me was a good brain and a good sense of humour, so I clung to them to get me through my life. They have been my pillars. 

As I always enjoyed using my mind a lot, my studies and my work were filling a huge part of my life and I was pleasantly distracted with these pursuits to the point that my looks no longer occupied my thoughts, and my relationships were never really based on my physical appearance anyway; they tended to be more a connection of the mind and emotions, which is arguably a better basis anyway. 

However, I did all the usual things that women my age and generation are encouraged to do… exercise, do fad diets, change my hair, buy new clothes, and all the other usual things that women do to feel attractive, validated and appealing; but I always felt that it was never going to make me feel or look any better. 

In the decade leading up to what would be my health crash I was really enjoying myself and felt the most confident I had ever been with the direction of where my career and experiences were taking me. I left a lot of the people who made me feel my most unattractive behind me and I realized that there was a whole world out there! A world of different people and different experiences … and then the crash. 

Sadly, along with the crash in my health and abilities I rediscovered new negative feelings about my body… betrayal! It is heartbreaking. 

My body no longer moved the way I need it to. Feel the way I expected it to and so many things started to unravel that I can barely know where to begin describing it all. 

My weight yoyoed from putting on weight with medications and physical inability to losing weight from being unable to eat or digest foods. It’s painful and unpredictable. 

My skin has changed from the dryness of sjogrens and the bruises of steroids. My joints are becoming visibly changed and my eyes are sore and constantly painful. I am pale from the painful results of chemotherapies and unable to handle sunlight. My hair is brittle, dry and thinner. The damage to my nerves causes all sorts of issues that I wouldn’t wish upon another living soul, let alone someone who struggles with body image! 

I don’t see the person I thought I knew when I look in the mirror. I am aging but I mostly feel the years are being robbed from me! 

I force myself to take selfies to show those I love that I am still trying so hard to keep my emotional strength going through all that I do but I admit I don’t like taking pics of me in my wheelchair or walker. I try to make sure the pics are from the waist up! 

It’s clear that I am not the poster child for how someone should aim to be with disease, but when I set out on this journey of blogging I only ever wanted to be honest … not perfect. 

I want to face my demons and share my thoughts and hoped that by doing so someone out there would identify and maybe, just maybe, we would see that there are more like us around the world. 

Women are judged on their looks very harshly in this world but women who are also disabled or chronically ill are judged much, much more harshly! 

Perhaps together we can help each other make a peace and make a difference? 

Gentle hugs, 

Trish 

The Joy Of Isolation


When I was much younger, I thought that isolation was a sad and difficult place. A place no one would, or should, want to go. 

But that was many years ago and much has changed since then. 

Today I have a very different relationship with isolation and being alone. A very comfortable and intimate one. I would never have thought it possible. 

Today I feel most at peace when I am alone and I can work through whatever I have to deal with at my own pace and in my own time. I don’t have anyone to help or hinder. 

I enjoy the online community that is available and I can dip in and out when I am physically able. The key words being physically able. 

These days I don’t have as many physical abilities as I once had, so being alone means I don’t have to constantly perform for others. I can be relieved of a lot of the difficulties that having to constantly cater to, and taking care of many people brings. 

Isolation has become the new sanctuary for me and this life. 

I never really thought such a relationship with isolation would be possible when I was a young person. I was trying to experience as much as I could as quickly as I could. But that’s a life time ago. Much has changed. It’s funny what we are looking backwards! 

I think that having to face a lot of challenges and some very difficult places and emotions changes you. Completely. It certainly has for me. 

Things that would have bothered me once no longer bother me at all or bother me far less. Friends come and go like waves on the beach, opportunities change and perspectives alter. 

Isolation gives me the time I need to make sense and peace of it all. It is my nurse and my closest friend. 

Perhaps some of you out there have grown to appreciate being alone in new ways since becoming chronically ill? Perhaps some of you haven’t. We are all different and respond differently. 

It’s strange that years ago when I felt more independent physically, I was far more reliant on others emotionally … and now the opposite is true! 

I guess that is just life and even now it can still surprise me. 

Gentle hugs, 

Trish. 

Square One 


I am writing this whilst in the most awful and mind numbing pain, so forgive me if this is not my best work. 

After almost a decade of all this I thought I would be further down the track of understanding and acceptance. Perhaps I merely hoped I would be. Today reminded me of the very first time I felt pain and frustration, the first time I was so heartbreakingly sad by it all, so I had to ask myself today how far have I really come? 

Not far at all! In fact it feels more like square one again. 

I guess I always told myself that it would become easier and that I would simply make room for the pain and losses somehow, but today I realized I am not that serene and positive guru that I dearly wanted to be. Today I feel broken. 

I don’t know why I gave myself this high benchmark to reach. Perhaps because society expects that you just go away and quietly accept it all and because I don’t really know any other long term sufferers who have become masters in the art of Autoimmune Survival. I think there are many amazing survivors out there, millions in fact, but I just don’t think there is a hierarchy. There are simply chronic survivors and people who don’t have chronic illnesses. No other levels. 

I feel tired, tortured and sad because this is my life now. This pain is always with me. I can never escape it or have a day off. Not even one. I feel sad that I don’t have a different life and I have to just accept this one as my normal now. 

I wouldn’t call this a dark day as much as I would call this a reality day… and the reality is that these diseases are hard. They are cruel. And they take lives away and don’t apologize for one second. 

I am tearful today and I know that this is a natural reaction to a painful and sad situation. I might be tearful tomorrow too. But I hope there is a happier day in my future soon and I wish this for all of you survivors out there who are doing your best too. 

Gentle hugs,

Trish. 

Stay Strong! 


If I had a dollar for every time I heard these words (or read them)! 

As chronically ill fighters we are constantly being told to stay strong when we are struggling or exhausted by it all, but I wonder how many other people could actually do this over long periods of time … like months? Years? Decades? 

It has become a meaningless gesture made worse by its overuse and is now more a throwaway phrase.  
Simply put it isn’t human to be strong all the time! No one can be … telling people who are struggling to be strong is unlikely to be helpful when they need it the most. 

However people will still say this perhaps because they don’t know what else to say to people who are suffering, and will probably be suffering in some way for the rest of their lives… It’s quite unimaginable. 

The fact is that we are strong. If we weren’t we wouldn’t have made it this far! Probably stronger than anyone else has ever had to be for most of their lives! 

But no one, I repeat no one, is strong all the time. Telling someone to stay strong may convey the idea that they are not doing their best or being enough. 

Sometimes I am not going to be strong and that is ok. Sometimes others will not be strong and that is ok too. It’s the human condition. 

If I had told those people who had turned to me for donations, financial assistance, empathy, kindness and help over the years … it’s ok, just be strong! … I am sure I would not have been seen as helpful or understanding in anyway. 

What is strength, after all? 

Is it the ability to never fall or fail? Is it the ability to never need kindness and warmth from another person? Is it to never need anything for yourself? Is it the ability to never hurt or cry? I don’t think this is strength at all. I don’t think this is even human!

A lot of people may want you to be strong so that you don’t impose upon them, sadly that is becoming more true of society today, and therefore they disguise their true motives behind the statement… But it is not a reflection of the sufferers emotional or physical strength. 

Would it not be more important to assure the person that they are not alone in these times? Would it not be more helpful to assure them that their efforts do not go unnoticed? That their pain and suffering has shown what courage they have and what love they have? 

I would not be here today without the love, support, devotion, patience, forgiveness, belief, efforts, commitment, reassurance and hope from the ones I love and from myself. Strength is the product of all those things in combination and not one single entity on its own. 

Strength is the end result when all the other elements are present and working together, it is not the beginning

Gentle hugs, 

Trish. 

Living it up! 

One of hardest things to do when you are chronically ill or house bound is to make a life out of debilitating illness. It’s unbearably hard sometimes!

I often think back to my life before and wish I had those chances all over again. There is so much I would try to do differently. I would certainly appreciate my abilities more and not take them for granted. But they are wishes and this is reality. 

So what now? 

Today the struggles are real and it is a lot harder to make a happy and fulfilling life out of pain and challenges. Even with the help of a wonderful husband and carer, there are just some things that are beyond my reach now. 

I find myself having to shift my expectations about life and living so that I can find something for myself within the mix. Having said that, my ability to create an enjoyable life requires much more help and physical assistance these days. If I want to enjoy some things outside the realm of my home I will need help and assistance to achieve it. Independence is a luxury that many chronically ill can not afford. Therefore one of biggest things about creating a happy life in my position is being able to get the help and support needed to access some life. 

I suspect that Oscar Wilde had his own picture of what living is and I think that is an important point when it comes to assessing your own life and that is what yardstick you are using? 

If we use a healthier or able bodied persons definition then we may be doomed to be forever just existing. This is an easy mistake to keep making since I was more able bodied for longer than I have been disabled… I know this won’t always be the case though. 

These days going into my own garden is a real achievement for me, for anyone else this is a simple and mundane task. Is this living or existing then? My answer can change on any given day and that is also one of the challenges I must deal with i.e. The shifting nature of my feelings and abilities. 

I consider myself an intelligent person so I have tried to look at these questions in many different ways but ultimately I must confess it is a real enigma to me not unlike the question posed by Schrodinger’s cat. 

( https://www.quora.com/What-does-Schrodingers-cat-theory-prove

Is this a life or just existence? Or is it both? 

Gentle hugs, 

Trish. 

Healthy Self Esteem In Unhealthy Times


Firstly I am going to say I am no expert at this and I struggle just as much as anyone else might, maybe even more, but I have also felt that unless a Psychologist has had first hand knowledge of what disease and disability can do to a persons self worth than I personally doubt their abilities to help me in this challenge. That is purely my personal opinion based upon my experiences of several sessions with a counselor. 

In our time I am sure that we have all read at least a few books or articles suggesting how to build up our self esteem and self worth so I have drawn on those times and articles whenever I have faced my darkest times. It has varying degrees of success and I admit that I still cry, I still hurt and I still do my best whenever these feelings descend on me. I am not at a master level of self esteem, not even close! 

Truthfully, for most of my life I struggled with self esteem and self confidence issues and tried to channel those struggles into being able to be useful and effective in other areas of my life, for example my work and social life. Always trying to please others. It’s a typical path I suspect. Sound familiar? 

If self esteem and self worth is not nurtured and encouraged growing up then it can be very hard to try and build it as an adult, especially when life is handing you some difficult situations and issues. The blows can be much harder and getting back on your feet takes much longer. A lot longer. 

I have always admired those people who seemed to have such a healthy self esteem and always believed in how wonderful they are. They are amazing to me even if they are also extremely foreign. But nevertheless I admired it and wanted it for myself. 

The irony was that I could always see so much good in everyone else but myself. I felt as though everyone was more valuable and talented than me. It is a heavy cross to bare. 

And then came along the hardest life challenges imaginable; chronic and debilitating illnesses. It has been disastrous physically and emotionally. 

Over the past decade I have tried to piece together a workable self esteem amidst a barrage of attacks from many different sources. 

If you are someone with chronic illness you are probably already nodding and can list a million of your own battles and self esteem issues… it’s so common amongst these illnesses and very little has been done to redress the balance. Disgustingly little! Many of us are completely on our own when it comes to coping with these issues. 

It becomes harder still when friends and family desert you, you lose your job, medications affect you, your relationships are strained, people doubt you or criticize you and hurtful things are said or implied my many people; including the medical professionals! It never ceases. 

I literally couldn’t be driven down the street without someone saying something about my wheelchair or health situation! The messages we get from society at large are not the most positive or helpful either. 

Everyday it seems we have to prove ourselves in so many ways. Prove we are still worthy of love and loyalty. Prove we are truly sick. Prove we are not dramatizing. Prove we still have value. Prove we can love and be wonderful partners. Prove we still have character beyond our illnesses… and the list goes on. 

More scrutiny than anybody should have to bare and more than others have to bare. The scrutiny and judgements are exhausting. It is little wonder that so many of us choose to retreat and become reclusive. 

But we still have to have some sense of self worth in order to want to keep fighting on, even if we are fighting alone. 

So where do we start? What do we do? How do we get there

I wish I had a PhD in these answers but for me it is not a straight line and there are many many set backs along the way. It is so much harder to build something when you are unwell and struggling but life doesn’t give us a choice. 

I have started by trying to find something I have enjoyed about myself and that I like about me. Anything. Even if it’s something no one ever sees or knows. And I hold on tight to it with everything I can until it can rise up on its own. For example, I love my furry companions. I adore them. I know in my heart that I would do anything for them and treat them with such love and respect. Does this make me valuable? I believe it does to them. I am proud of how I have cared for them and been a true provider. When someone attacks me or my value I try to remember the love and bond I have with those little lives and I believe that has been my first step to getting some grip back on my self esteem. 

This is not a complete list or meant to be exhaustive for everyone … but it’s a start. It’s a start towards validation and acceptance of myself. 

As I said earlier, the road is not a straight line and there are many set backs. But I like to think baby steps still count. Self love seems to be always out of my grasp but self acceptance seems to get closer. 

Although many of us feel like open wounds for the world to prod and poke, we are still human beings. We all have a fundamental worth that exists in everyone. I can’t afford to let myself be responsible for other peoples cruelty, ignorance or lack of humanity; it isn’t my fault. 

So this is my way of talking about one of the hardest challenges of my life outside of these diseases. I would like to think that one day when my time is up I will look back and see progress and believe that I have done my best. In the end that is all we can ever do. 

Gentle hugs, 

Trish