The Last Taboo

I would recommend you using your own discretion when reading this piece because I intend to use my own voice and share my own thoughts on this topic and I have never been one to follow the well beaten path or pander to the mob. The topic is about suicide and chronic illness so look away now if you don’t feel it is for you. No offence is taken or is meant to be made.

The cold hard fact is that if you haven’t considered this topic, or have revisited this topic during your illness then you are lying. We all have. Every chronically ill, disabled, disabled person and anyone suffering real health issues has. Period. So let’s just get that out of the way and start real discussion about it.

I have contemplated this topic many times during my illness and have considered the release from pain, disability and struggle that it presents me. As illnesses have progressed, my life has become smaller and my independence eroded it is a common question that I am forced to ask myself repeatedly “…is it worth it all this pain?”

I don’t have the religious convictions, the social taboos or social stigma that many other sufferers have regarding this topic so it is perhaps a little easier for me to be more honest and forthright about it. I am trying to use these factors to write an honest and understanding piece which I hope will be able to reach a greater many people who might be able to identify and also feel released by my having done so.

There isn’t a day that I havent felt the loss of my old life and the weight of this new reality. A reality I have no control over. I must battle whatever these diseases present me with and accept whatever comes my way. This isn’t easy. My best day is what most people could not endure, and so it is not unreasonable to assume that they too would not wish to continue with it.

Over the years I have had to manage unbearable moments, heartbreaking losses and a degrading in my abilities but the strangest part is how most able bodied people think that I should simply just deal with it. I have often thought of how they would respond to these circumstances and I know exactly how they would. Without exception. They would possibly not handle it as well as I have and possibly not as long as I have.

When I say “…as well as I have…” I am including in this that at times I haven’t handled things very well and have become very depressed by it all. Absolutely. The public face I have shown is far different from the private one. But I am also human, and a very feeling human at that. The truth is I have dealt with things as best I could and that has to be how I regard myself everyday.

In my life time I have known a number of people who have chosen to end their lives for many different reasons and it is only in the past few decades that suicide is given a fraction of the discussion and consideration that it deserves. It has always been steeped in shame, loss, anger, disrespect, embarrassment and many other emotions but not openly and honestly discussed. Not really.

There have been movements around the world whereby certain categories of people have asked for help in ending their lives with dignity and respect and in a manner of their choosing. If they have incurable illnesses, diminished lives and no hope for recovery they have been given some modicum of respect for their circumstances but this movement is incredibly slow and at a glacial rate. There are a lot more voices drowning them out who aren’t even in those circumstances or going through their pain. Yet they have enormous power over those souls who are struggling.

For those I have known who have committed suicide and done so for reasons such as loss of job, loss of money, embarrassment, shame, grief and feeling of hopelessness I can identify with all of this. I have gone through all of this and continue to do so all the time. It doesn’t simply go away and there are many triggers in this world that can set them off and few things that can ease them.

A lot of the time, in these moments, I need things like hope, understanding and love to help manage them and get through but this is a preciously rare commodity at the best of times. It is especially harder to find in a world were Autoimmunes are often rejected, dismissed and downplayed. we are isolated, abandoned and treated with disbelief and suspicion for most of our battles.

In these dark corners is where dark thoughts abound. Thoughts of whether it is worth the endless battle to stay in a world where at best you can only be overlooked or tolerated, it becomes easy to just let go. It is for this reason that we need to recognise the constant battle that many Autoimmunes have on a daily basis.

Of course I don’t speak for all Autoimmunes! So please do not write me about how my writing doesn’t reflect everyone’s circumstances. I already know that. But I do wonder if even the most adjusted Autoimmune, the most able of us, the most POSITIVE one amongst us hasn’t asked these questions themselves and may never admit?

My perspective is this. We can never know someone’s realities and how hard they have fought and for how long. You can never know the physical and mental pain they have battled and for that reason their relationship with suicide and living is a very personal one. No matter how you would act if you were in their circumstances is immaterial!

We are in a time where we are beginning to embrace people’s different voices, accept more rights and make room for different perceptions and I hope that this will filter down to a very important topic and allow people to speak more speak openly on their battles with living.

Often times one of the factors that have led to someone’s suicide is the lack of understanding, helpful, supportive, nonjudgmental and caring people there are in this world and especially in the persons world. So please consider this when dealing with this topic and dealing with those that may be wrestling with the idea of whether they can go on and endure the hardships they have.

Love, hope and compassion can go a long way but they don’t negate the real battle of living with constant pain and diminished lives. This is an entirely different concept and should be treated as such.

As always I have written from the heart and with the hope that it will help someone out there as well as myself. I hope that by connection we can feel less alone and less broken. We can respect each other and learn what it’s truly like for those out there United in a constant battle called Autoimmune diseases.

Gentle hugs,


How Are You Feeling?

If I had a dollar for every time someone has asked me that over the past decade or more I am sure to have been a multimillionaire by now. But it strikes me as odd that I still don’t know how to respond, so I usually don’t.

If I do respond it is always in an arbitrary way which has nothing to do with the realities of how my health it is. It has become instinctual to say “fine, thanks” and then move on.

Unless I am speaking to either my specialists or someone whom I know is invested in the realities of my day to day battles with my health than I will never really answer this question with any details whatsoever. To everyone else they will get the same response. Always.

I have wondered how other people battling autoimmune diseases answer this question. Do they go into details? Do they share their day to day struggles? Or do they simply try to smile and say something more prefunct?

I really don’t see any point in going to any details of my life or my health battles with most people, regardless of who they are. They may be curious, mildly interested or simply being polite. Either way I am not inclined to share the constant struggles that have become my day to say life. I don’t feel like it can be, or should be, a trivial topic meant to pass the time when it has such a huge impact on my existence.

So I don’t share. Ever.

Most people are simply unaware of the huge complexity to such a question because they have no idea of the level of difficulty (and pain) that one thing can cause. like asking a cosmetologist “what is space like?” The answer is that it is mind blowingly. More than most people can possibly comprehend.

Depending on who the person is, the way in which they ask, the level of confidence we share, their real reasons for asking, why they are asking and a whole range of other factors, the result is that I rarely ever share a single detail.

I have decided that unless the person can or will be part of the REAL support needed in the help and coping of my autoimmune realities than I would rather not let them into my world. Even if they are being “well meaning”.

REAL support for me is being there when I need assistance, offering hands on help, offering the deeper emotional support that I need to get by, being a part of my reality and someone who I can really turn to and rely upon. If you fall outside of this than you will get the same walls everyone gets as they are so important to me being able to get through this life.

I don’t share my struggles for entertainment, gossip, small talk, pity, self indulgence, curiosity or any other superficial reason. I prefer not to talk about my health than to talk lightly about it. So I don’t.

The great many people will seem to ask me “how are you?” In an almost dismissive way and so I answer them in the same way. I am sure we all do this within our social norms. I don’t mind at all. I don’t even think about it again. It’s customary for people to ask, smile, and say “fine, thanks” to such a question and I am not breaking any tradition with my responses.

Nowadays if you are not part of my day to day, hands on support/management plan then you are not the person I will ever share how I am truly feeling or what I am going through. Sadly this means that those autoimmunes which have real battles to face are often alone in them and hurting. It’s a thing we have all had to try and accept and is part of our shared experience.

Another factor is that my physical status and my emotional status can vary and diverge. For example, “how are you feeling?” Could be asked by someone trying to find out how I am feeling within myself on an emotional level and often I can distract myself, focus myself and hold fast even when my body is raging. How should I answer during these times? Again, I choose not to.

To the casual reader my piece may seem cold, detached, sterile or even sad but I assure you it isn’t. Like most of my life now, I have had to take a very honest, impartial and neutral position so that I can best cope, comprehend and respond to all that is going on. It is my hope that I have been able to better explain to the large number of people who have asked me over the years “how do you feel?” how exactly I FEEL about rheir questions and I hope to connect with other chronic/ disabled people who may better understand what I have written.

I recently had an OT visit my house and because she knew first hand of what I may have to go through she knew there was no need for the question abs so she just smiled and “how can I help?..” people who truly understand know exactly how we may be feeling and they are the only ones that I will ever answer that question for…

Gentle hugs,


Defining moments

If I have to read another post or meme about “my illness does not define me” I am going to scream! I am still unsure of what the purpose for these types of statements are… seriously.

Let me step through this a little.

For each of us who have illnesses, diseases and disabilities we will all have our own experiences with it and it will vary largely on the extent of these illnesses and the impacts on our lives. this is simply a realistic. If you happen to be someone who may be able to live a mostly NORMAL life then, generally speaking, you will not find the situation much different from others.

However, if you happen to be someone who is largely effected and your life mostly altered then these factors play a much greater role in your life, what you can do and who you can be. They WILL define your life and your life choices! Every. Day.

These posts which fall under the heading of positivity porn and ableism are really meant to placate the greater number of able bodied people but do not help those who face real difficulty and fail to get proper supports day to day. Those of us who do face day to day impairments are not exactly brimming with gratitude for your serving of disregard and downplaying our realities.

The fact is that I have had to give up my career, many of the activities I once did, a lot of my independence and it is drastically altered my life choices… so, yes, it has defined me to a large degree! It defines the life I can have and the choices I can make.

Many chronically ill sufferers can not have children, careers, financial security and even struggle to find partners due to their conditions. Does this sound like some trivial factor? No! Definitely not!

So what is meant by the term “…define me?”

Does illness change us? Speaking personally it has changed me a lot! It has broken me down to my foundations, altered my outlook, changed how I value things and manage things, changed how I interact with my life, changed how I see others and also see myself. So I cant really understand how someone might say that it doesn’t define or redefine us!?

As you can see from the definition provided, our health does define much of what we can do and set limits and boundaries to our lives and futures. So I ask myself “what is so wrong with acknowledging this?” Why are we made to feel less, inferior, shameful or weak for acknowledging this? How is it more beneficial to try and downplay the realities of life?

I recall a disabled advocate who had several conditions which had rendered her in a wheelchair and caused her many struggles in life. She once said “… all the positivity in the world isn’t going to get me up 12 flights of stairs in a wheelchair…” And she was right!

At this point in my life I yearn for acceptance of myself and acceptance from the world. No more. I don’t want to have to inspire people by my positivity or pretend that my life isn’t different and at times heartbreaking. I don’t want the world to dismiss the plight of others with health conditions as simply whingers, malingerers and drains on society and for as long as I live and breathe I won’t be beaten down by the pervasiveness of positivity porn and ableist rhetoric. I will continue to speak my truth.

Acceptance offers more power than most people imagine. Especially for those who can then use this as a platform for better life plans and choices. It’s not easy to temper some of our dreams and ego with reality but it is often a more stable way of living a life and reaching goals. Today my goals are completely different than prior to my health changes. Today I must be happier with the little victories. The small achievements. The baby steps. When I don’t pay attention to the noise from outside all telling me to be more positive, try and fit it, disregard my boundaries and be more acceptable to others, then I can truly have a chance at living a happier and more content life!

Gentle hugs,


Bedside friend

It strikes me as odd that I have never written about those friends that have visited me by my bedside and given me the greatest gift in all this years of being autoimmune; Their time.

It seems strange that I have never mentioned this before when it is, without a doubt, the thing I am most grateful for, despite the fact that I feel at my most vulnerable and awkward.

When I recall all the times in my youth that I would travel to friends or to locations to meet up with them or drive them to places for catch ups and to enjoy some time together, I never envisioned a time that I would need them to make such the journey to me.

Many friends and family will not do such a thing for fellow Autoimmunes and it can become very hard to stay in touch and so connections and relationships are lost over the course of an Autoimmunes life. It is a sad reality that I find myself having accepted quite some time ago.

Today I rarely have people come to my house for social reasons. Most of the year can disappear without speaking to or interacting socially, but I am not writing this in a self-pitying way, but rather in an honest way, and with the intention of highlighting how truly appreciative I am for those who have decided to forgo the customary social norms and spend time together.

Friendships and connections take on a vastly different meaning to those of us who have health challenges and are immune compromised. There are real challenges in going anywhere and being able to do things that most people take for granted. Like socialising.

Generally speaking, the challenge of going out and visiting with people is almost out of reach most days with pain and disability being such real daily factors for me. It can be heartbreaking for those of us who must battle just to dress and even talk.

I, personally, don’t enjoy people seeing me in this vulnerable way and I know that many people won’t ever know the things I am battling internally when they see me. I have had to accept that and take it all onboard. But it’s far from easy. In fact it can be so isolating and heartbreaking.

However, I have been truly surprised and amazed by those friends who have opened their hearts and minds and even travelled great distances to visit with me, sit beside me and even interact with me at my bedside. Even now as I recall those special people who have done so I am truly amazed.

I can’t imagine what must be going through their mind as they sit beside me and recall all the things we may have done together in the past, the times we have spent together, and the fun things we have done, only to see me now sat up in bed and clearly limited by my health and circumstances.

During these times I will do my absolute best to push away the awkwardness I feel, the sadness and pain I may be going through emotionally and the limitations that I must work with so that I can enjoy the opportunity to connect with them in a real way. I try to “seize the day” and the opportunity to laugh and show them how grateful I am for their efforts.

Those that have made the mental and emotionally journey to meet with me have all been such genuine, authentic, resilient souls that I now have a deeper and stronger respect for. Perhaps I didn’t recognise the true depth of their character back then and the chance to see this has been truly amazing. Often I have been lost for words as I try to describe my feelings about them. Even now.

From a childhood friend, an ex colleague, a neighbour and even a one time lover, they have all surprised me by their capacity to open their hearts to me and take on this new reality in order to spend some time together.

Rarely do I want to mention my health or my limitations during these meetings, I am grateful when they don’t want to discuss these things either. Mostly because I spend every other moment of my life being made aware of my challenges that a “time out” is a welcome and much needed relief. In fact I rarely discuss any aspects of my reality to anyone outside the medical profession. I prefer it that way.

My bedroom has become a meeting place, however, I don’t really enjoy sharing it with visitors because it is also the place where many unseen battles rage and many dark moments are spent. It is amusing to me, in a strange way, that this intimate part of my home must also act as a social space now. My bedroom is now a place that is more used than my living room or any other part of my home.

Bedside visits have become a social setting for me now. the backdrop of my new reality, and one aspect of my life I must simply have to accept if I am going to have a social life at all. I am grateful and humble beyond words to those that have had to lean into this new reality with me and have done so FOR me. To have me in their lives and to share some precious time together.

To those who are reading this and realising I am writing this for you I want you to know how much your visits have mean to me and how often I have relived them in my mind and heart. I hope that you know how truly precious they have been to me and how much they stand out in my mind as I fight the hardest battles and the darkest emotions day to day. From the bottom of my heart I thank you.

Gentle hugs,


No straight Lines

No Straight Lines

Recently I was speaking to an older relative that was getting married after several failed marriages and he was concerned about how many times he had tried to find the perfect partner and how sad it was to have to have ‘failed’ so many times.

I listened as he explained.

However it occurred to me, later, that life is never a straight line between birth to our perfect partner and it takes many twists and turns and it is not other people’s opinions about when and where we find someone that matters.

One of the complications many people seem to overlook is that as we grow and age we are rarely the same person and our needs and who we are changes with us. The person that might have been a good fit many years ago may not be that person anymore. Sometimes we don’t know what we want for many years until we learn more about who we are and what we value.

Self awareness seems to be a large factor in what suits us best and who we can find a comfortable fit with. This is never easy. Sometimes it can feel almost impossible.

Speaking personally I can honestly say that every relationship I have been in there was always a level of love and affection for them all, but that never guaranteed a happy ending. Far from it. The truth is I have a very loving heart and can love almost anyone for who they are. Being a caring person also made me commit to someone who I was not to be well suited for and ultimately we both had to go our own way, with the baggage we collected from the failed relationship. It’s not easy breaking up, even from those we know we should leave.

Through all the relationships I have had I can honestly say that I am no expert in relationships but I have become very good at knowing myself from each experience and become more self aware of all my needs, strengths and weaknesses. This has often been the silver lining in the most painful of circumstances.

I learned to know what my core values were and the things I wanted and those that I needed.

I no longer feel guilty or remorseful for who I am and the mistakes I have made along the way!

Sadly, we may also stay in situations because we feel guilty or because we don’t want to let the other person down. I am sure that there are many millions of people who today find themselves settling for relationships that aren’t really filling them up and we find we simply exist in a state of ‘this is ok’ and ‘it will do’.

I wish I could be like that. Sometimes I truly wish that I could see the world like that. But being who I am I realize that I have a very limited time on this earth and I want to make the most of that time and the opportunities it presents me.

When illness visited me and changed my world forever there is a predominant view that we become less or should be grateful for whatever we can get. We become undesirable as a partner by most of the world. This is perhaps the hardest and cruelest assumptions of all. Despite our health changing I fail to see how this diminishes us as people. Often we become stronger, kinder, more loving and see things we never saw before.

I found myself unable to stop wanting, reaching, pushing, fighting and reaching for the things I wanted, despite the fact that my body was often difficult to manage and hard to utilize. I couldn’t help but become more aware of the person I really was and the person who still lived inside. My spirit has been unbreakable. Despite my body breaking down often!

I have fought hard to let who I am out and show her to the world. I have more needs, desires, hopes and feelings now more than I ever had before. And to be honest I love that about myself. Completely.

Several months ago I realized that I have a few decades left to do all the things I want to do, feel the things I want to feel and see the things I am deeply curious about. I want to take advantage of every opportunity!

The perfect relationship for me is someone who recognizes how I see myself now, loves the person I have become and needs the woman I truly am. All my weaknesses and my strengths.

I once discussed the topic of love with my mother and I said I believe the person who means the most is the person you want to share your best news with and your worst news with and also the person you want to share most of you with. Unconditionally.

The one who makes you laugh, makes you think, makes you try and makes you dream. They are the one you don’t want to live without. Not merely someone who you can simply live with.

Years ago, in my early twenties, I used to have a notion of what being in love was, how it should feel and how it should look and it stayed that way until the day I actually fell in love for the first time and from that day it changed me forever. Like the way my illness changed me. I was never the same again.

Life changing events change us forever and there is no predicting when or where they will happen.

As for my relative who seemed saddened that his life had had many twists and turns and finding love has been a difficult road to walk I think that no one should ever judge us for where our hearts take us or condemn us for where we find love as it is not their life to live or their hearts to fill. We all have different paths to walk and when we realize that it doesn’t have to make sense to anyone but us is the day we learn to love ourselves better too.

Gentle hugs,


Building The Dream Jo

Dreams can be wonderful and amazing things and I confess that I have been an avid dreamer for all my life. I have often lived in the alternative reality that my dreams provide and this has been even more so since my health battle took me over a decade ago.

Dreams and goals are incredibly personal and intimate things and seem to play varying roles in some people’s lives ranging from mere whimsy and entertainment to highly focusing and motivating. I have evolved into the latter.

I didn’t think I would become this person I am today, due of all that has happened to me over the past decade, but I have become more desperate to make my goals and ideas come to life. Why? That’s the question I have been asking myself more and more lately.

Having plans and goals can become obsessions to people if they find themselves needing change or something to focus their efforts and imagination on; and especially if the current realities are particularly difficult or mundane.

Whilst most people may dream of taking a holiday, finding a soulmate or of career advancement, I find myself ‘locking on’ to ideas and goals in order to pull through some of the worst emotional, physical and mental times and to find hope and respite in them.

Today my goals and plans for the future are like a beacon to see my way through my day to day struggles. So vividly can I see my goals that I can ‘feel’ them, ‘taste’ them and ‘breathe’ them. I will then start planning my steps toward them and I don’t give up until I absolutely have to or they become impossible to reach; even then I can tend to hold on.

The ‘gift’ of dreaming and planning can be a very a difficult one to bear for those of us who have physical and medical challenges. They are infinitely more harder to reach and seemingly more heartbreaking when they can’t happen.

My dreams are such a big part of me and so intimate and personal that I don’t share them with just anybody and there may only be one or two people who will ever know what I am putting my heart and soul into. I will zealously guard them and work hard towards them under the most painful of circumstances and physical pain.

The past decade has been a long series of trials and errors with my goals to see what I can do and what I can make happen. Many obstacles are placed in the lives of the disabled, chronically ill and health challenged that it can be heartbreaking and lead to desperate many times, it is something the able bodied constantly take for granted.

Things that are seemingly easy for the average person can be Herculean to us. When your body constantly throws you into a state of pain, frustration and torment even the simplest of goals like gardening, shopping and even walking can be a huge physical challenge!

My plans to travel or study have constantly been cancelled by flares of pain or increased disability. There have been so many times that even the plan of going for a drive seems completely out of reach.

Over the years I have recognised that my type of personality does not take these shortcomings and set backs very well. I will become very frustrated, more determined and at time’s even angry at myself when I can’t do the things I have set myself. Failing to reach some goals has caused me indescribable boughts of anguish and torment. I wish it didn’t and I try to process and work throughly things better but I am far from accomplished at this but I Am trying.

As a former project manager I am a constant planner and designer of ideas and goals and I approach my dreams as I did the projects in my professional life. I will construct the steps towards them and assign timelines and resources towards completing them. I will also push myself to advance these steps and devise alternate solutions in order to finalise them.

Those people who have been supportive and instrumental in helping me achieve my goals have been incredibly important to me and I treat their assistance with a life long gratitude and devotion that they may never truly understand. It is with this in mind that I first realized my feelings for my now husband when he began taking on my dreams and lending his help to getting them.

Conversely, for those who have endeavored to stop or block my dreams and plans for future happiness I have very little patience, tolerance or time for them.

This topic presents a particular difficulty for me as I have always strived to be a relaxed, zen like personality who tries to weather the storms of life in a resilient, even humorous and accepting way, but this becomes very difficult (and at times impossible) when it comes to the subject of my dreams and hopes.

Dreams and hopes are the fuel to my machine now. They are the stuff that drags me out of any reactive depression i might have to my circumstances and they are the fire in my soul that gets me out of my sick bed. I owe my life to them and my future to the pursuit of them.

I have also surprised myself with my level of ingenuity to get things done when faced with health challenges and circumstances. In order to overcome various roadblocks I have had to reach deep into my mind to discover solutions and work arounds. No small feet when you are unable to move or see and incredibly weak!

For those of us who have battled through our health challenges to do even the smallest thing we have hoped to do or have striven for, the rest of the world will never comprehend or recognise what it takes. They can even undermine the enormous strength and effort needed. It is for these reasons that I have always kept my dreams and plans to myself and kept chipping away at them.

Building dreams for those of us with health issues and physical barriers is so hard and, at times, heartbreaking. Harder than many people will ever realise. But without these things in my life I am certain I would not be alive to write these words or to encourage others to never give up on theirs.

Gentle hugs,


The Growing Problem

Recently I have had some more revelations and perhaps the backdrop of a very difficult and emotional year has helped some of these discoveries come to life. Perhaps? However, what these revelations will be worth to me remains to be seen.

It started with me thinking that for as long as I can remember I have marked off each year with the vain hope that the next year would be better. The problem is though that we have limited years left to us so what can be done with all these wasted years and how can the future be any better?

I recall when I was teenager how I felt happy that I was no longer considered a child and yet being a teenager was really hard too. As a young adult I was glad that I was no longer a teenager and had I had more independence and control of myself. When I entered my thirties I was glad that I was done with my twenties and felt a little more confident in who I was.

This trend seemed to continue throughout my life until today I find myself approaching middle age, looking back on what was and worried about what is to come.

I like that I know myself better as I have emerged from each struggle, difficulty and pain but I am also worried that I haven’t done what I wanted, been what I should have and have what I think I want.

And time is running out to change things.

Perhaps we all feel like this? Perhaps it’s just me? I see more mistakes and losses looking backwards and I don’t see where the remaining years can take me. This can feel deeply saddening, sometimes, and other times it can feel confusing. Sometimes both.

The problem is that at my age and place in life everyone seems happier and more content than me. Everyone seems to have answers that I don’t. Everyone seems more at peace than me. Perhaps that’s just my perception ?

A quick glance at some memes and motivational tidbits and we are told to remember to seize the day, be all you can be and do what we feel inside, but how realistic are these things? I have been told these things by people who also have told me how terribly difficult their lives are and how awful their jobs are etc.

So are we any better off at 50 than we are at 15? Instinctively I want to say yes! But I am not sure it’s true anymore. You see quite often I feel like a 15 year old trapped in a 50 year old body. And I think on some deeper level I always will be no matter what age I am.

To me it seems like it is human nature to want to believe the best is yet to come, to believe we are nearing some sort of Nirvana type state the older we get, but I think that what we see is simply the recurring pattern played out over each decade and being replaced with new worries and concerns.

When I was 15 I didn’t know a thing about life, or anything else for that matter, and today is no different. I am still as clueless as ever but I do know a tiny bit more about myself and that’s all I feel I have gained over the past 50 years and it feels incredibly soul crushing.

I see young people look at me as either a great inspiration or a cautionary tale for their own lives, depending on how they see me. When they see me as a chronically disabled person they look as though they don’t want to be me just as much as I wouldn’t want to be them either.

I think the truth in all this is that the price of living means you forever swap one set of problems for another. We swap different challenges for others. And so on and so forth.

There is no pinnacle of the mountain and no marching band when you get there. The cost of living is to forever struggle. Forever to look forward and backwards.

It was only then that I discovered the one ray of light in all this. It was only then that I discovered what could make it feel a little easier in the midst of such confusion and worries. The realisation that sometimes we meet someone along the way who sees our struggles, feels our pain, shares our lives and lights our fires to make us keep going one more day. They know us and feel is on a whole different levels and help us see ourselves.

And, for me, that’s what makes this life worth living.

What can I say?…

There are a few times in life that the average person doesn’t know what they can or should say to someone. Words just don’t seem to be enough and they don’t adequately explain how you are feeling at a time in our lives. For example, when someone we love dies, when someone we care about is going through a very difficult time and so forth. Not knowing what to say occurs primarily because the words don’t seem to exist to describe what you are thinking and feeling at the same that time and it just gets jumbled up.

These situations happen to me all the time since my health worsened over a decade ago.

So many times I find myself unable to explain to a friend, loved one or doctor all that is happening to me at any given time, despite them asking me to describe it. So much is happening at once that it can become indescribable! Most people have experience of some things for which they try to compare and orientate themselves with but they are truly able to understand the inadequacy of their yard stick.

It’s not their fault.

It can at times even feel insulting if someone tries to compare something with another thing that is vastly different. For example, I recall how many times people will compare their fatigue to that of the chronically ill or autoimmune. It is like someone comparing the ocean to a swimming pool. Yes they are both a body of water, but they are hugely different. Anyone who has never seen the ocean or experienced the ocean will always refer back to the swimming pool for their reference point.

And this is the problem.

Last night I was asked by a well meaning friend to tell them all that was happening to me and what I was going through. The enormity of the task overwhelmed me so I declined. It would be too hard for me to describe and too difficult for them to try to understand. So I choose to spare people the difficult task of even trying to understand. This is especially true if I doubt the sincerity of their request, and sadly their are many that ask who don’t really want to understand but to simply belittle or downplay.

I remember a woman once told me “I know what pain is because I gave birth!” I am sure she did endure terrible pain while giving birth to her child, I have never tried to convince anyone that they don’t have their own definition or experience. However no woman I have ever met has had to give birth while feeling like their joints are on fire, their vision has gone, they can’t move their arms, they haven’t slept for a month and they have lost their jobs and will never work again!

Although my days are a battle, the truth is the battle is constantly shifting and changing. As more and more parts of my body and system has given way to the effects and damage that my own immune system has done to me, more and more things are added to what I must contend with. It is progressing and changing with every year. I can never get acquainted with what is happening before something flips and changes again.

What started many years ago with sore joints, fevers, aching, tiredness, headaches, occasional vision issues, fatigue, malaise, pain, memory issues, blurred vision, numbness, bowel pains, nausea etc is now effecting every area of my body from my hands, to my feet, from my heart Rhythm to my breathing. Everywhere. At any time of the day or night.

Being able to simply walk to the bathroom, go for a drive with my husband and sit in my garden is an absolute achievement for me! Doing my own hair and makeup and going somewhere is something I must remember all year. Laughing and feeling normal again is both beautiful and a sad reminder of the life I once had.

Aside from the physical pain and difficulties people like me endure we also have the additional pain and struggle of the emotional battles we are fighting. Everything from the grief of losing our former selves, to the cruel denial of the world for what we go through. The depressing effects that pain, frustration, anger, grief, futility and loss has to the embarrassing, agonising, insulting, annoying, callous and ridiculous assumptions that the world makes about us… And everything in between.

Sometimes even our own fellow chronic fighters can turn on us and belittle us by attempting to be more virtuous, more self righteous and doling out ableist rhetoric and virtue signalling to those who have already endured enough. It is I’m comprehensible at times. We often find ourselves retreating inside and away from the world only to add loneliness and isolation to the list of challenges we endure.

Some of the worst things that these illnesses do are not simply to our bodies, lives and futures but also what it does to our connections, our relationships, our friendships and our bonds. It can make strangers of our closest attachments and put such distance between the most loving relationships. Watching a relationship break down over changed circumstances, lack of understanding and difficult expectations is truly tragic but has become the norm for so many of my fellow Autoimmunes and including myself.

What can I say about it all? What can I tell the people I love, the ones I care about and the rest of the world? I really don’t know what to say most of the time… but I keep trying.

Gentle hugs,


A Believer

Many years ago my mother told me something that has stayed in my mind ever since the day she said it. She said “…people will believe whatever they want to believe…” She went on to say that no matter what you do or say it will mean nothing to them. People were always going to believe the story or the version that they most wanted to be true.

She was right.

As a person that adores evidence and reasoning I found this very hard to accept and I wanted to believe that she was over exaggerating human nature. However, no matter how much I wished it wasn’t true it didn’t change the fact that, on the whole, it is absolutely spot on.

People will believe what they want to believe and what they deep down hope is true. It seems human nature to put our hopes and needs before what we can see is true. We interpret things that best suits our own world view and proves us right.

Because many things in life are not always black and white it allows us to paint the greys the way we want to. See things with the bias and intention that best suits us. Argue in favour of what best helps our cause or plight.

It is for this reason that I no longer try to correct peoples ideas or misconceptions about me. It is a futile and pointless exercise. If someone wants to believe something about me or interpret what I have done or do in a certain way then I no longer try to explain things from my perspective.

I used to work extra hard at proving I was better than how some people saw me. I would offer as much proof as I could of my kindness and worthiness. I would bend over backwards to try and please others and have them like me. Not anymore.

No matter who the person is in relation to me, if they choose to see things through one view or they really don’t want to see things from my perspective then I feel no obligation to try to dissuade them. If they are invested in seeing me one way or my actions in a particular light then I am able to simply move on from them.

Perhaps the worst thing about how I responded previously was that I allowed peoples doubts and anger to turn me against myself. To doubt myself. To hate myself. My lack of confidence and self validation left me am easy target for anyone and everyone. I am sorry I allowed it for so long and I have had to work hard to correct it.

As someone who has health battles the opportunities to doubt myself and to turn on myself are constant. There are more people who will stand in your way, look down upon you, doubt you, ridicule you, mistrust you, trivialise you and shame you than there are people who will believe In you or support you. There are even fewer who will love you and stand by you through it all. These are also the factors that has led me to this point in my life and in my self belief.

I have had to stand up to and withstand the words, the hurt, the doubts, the ignorance and the selfishness of so many that it has shaped me into the person I am today and given me the ability to push aside those people and turn away from their beliefs. No matter who they are; friends, family or loved ones.

The online age we live in allows more and more people to share their opinions and comments about us without even having ever met us or know who we are. People are even more committed to putting others down in a race to seem better or more virtuous. It’s more and more competitive out there and empathy is not easily found.

I recall the example of one person who was committed to trivialising my struggle and making me appear as though I was simply looking for attention. I recall feeling so hurt and outraged by it all. I was especially disappointed because I share so little of the realities of my day to day struggle (even with my doctor!) that their actions and motives were so abhorrent to me. How could anyone do the things this person was suggesting? Worse still, how could anyone think the things that his person was thinking? I realised then that people who look down on us and believe the worst have a vested interest for doing so.

So, today, I remind myself what my mother told me many years ago about human nature and I also use this as a lesson to try to always think the best of myself, no matter what anyone else believes. It’s not for me to change peoples minds about me but for me to care more for my own well being than anyone else does. When we give credence to these people we take from ourselves.

For those out there who also struggle against the words and actions of those who look down upon you or judge you unfairly, I hope that you will also realise that you can either spend the rest of your life trying to change their minds (and you wont) or you can spend your life being more comfortable in your own beliefs.

Gentle hugs,