Dignity And Independence

Some of the most painful aspects of chronic illnesses are not just the physical pains we must endure but also the emotions around our sense of self and our ability to stay in control of our lives. It is a constant battle.

Little by little our illnesses can strip away the things we have spent our lives developing, building, enjoying and identifying with. Overnight our careers that we spent our lives training for, developing for, enjoying, focusing on and sacrificing for can be gone. Leaving the rest of our friends and loved ones still doing the things we can’t.

Our careers are also our financial security and part of our identity as people. How many times have you been asked “what do you do for a living?” and you quickly realize how significant it is to other people. Many people even have their self worth invested in their job title and their place on the corporate ladder. But what happens when all that is taken away?

It’s a huge identity crisis and made me feel absolutely worthless.

If you don’t have alternative financial stability then many of us become dependent on the welfare system or relatives/loved ones for support. We lose more dignity when we feel we are a burden on others and no longer in control of what we do and how we live. It’s humiliating at times.

Even doctors will treat you more differently than they do other able bodied people. I can clearly contrast the way doctors and health care workers treated me when I was a healthier, independent woman and when I became dependent on the system for my health and security. It can be incredibly dehumanizing.

As people around you become frustrated with your health and inabilities they can say things that hurt us deeply, even if it is unintended. They are particularly difficult wounds because they come from those people we love and rely upon for our strength and to keep going. A cruel, thoughtless or shaming word from them and the damage is utterly devastating.

Being reliant upon strangers, health care workers and administrators is particularly hard as they have so much control over your daily life and they are often completely disinterested in you and you are merely a number to them.

Losing abilities like driving and being able to go out in the world, unaided, is also devastating and all these things can become overwhelming to people such as myself who have always treasured freedom and independence.

As we have more and more tests done on us and our bodies probed and invaded, we feel the last shred of dignity slip from us. After many years of this most chronically ill would rather stay home and suffer then go to another appointment or see another doctor in the ever changing landscape that is the public healthcare system.

Able bodied people can plan holidays, parties, social activities, outings and make plans that we can simply no longer do without help and the strong possibility that we could be too sick to do them. when we can’t do them it hurts us much more deeply than the average person because it may have been something that we had been looking forward to or even living for!

I have had to learn how to accept these things and build a wall to protect myself and the dignity that I have left. I have had to let the unthinking words of friends and loved ones slide off my back and build strong boundaries about who I can let into my life and share a close connection with.

I have had to find a doctor that sees me as a person and beyond my physical symptoms, and this alone can take many many years to find! I have had to find friends who are both empathic and patient. I have had to work hard on my self talk and how I see myself. However, this is an ongoing battle for me and I have frequent relapses and times of utter despair and worthlessness. In those times I am reliant on my inner circle to help me back on my feet and keep going.

I am particularly careful to avoid those people who often try to compete with their “…oh that happens to me too!” Or “I have been in worse situations” when they interact with you. Especially when they are not living with illnesses and have not lost so much of their existence to diseases.

These little passive aggressive comments only serve to try and belittle or demean our daily struggles and rob us of our dignity. The fight for our self esteem, dignity and independence is a constant one and often we must fight ourselves and our emotions when stress, pain, flares, relapses and life events come along to derail us.

I am fortunate to have found a few chronic buddies that have become my world and we share our struggles and support each other the best ways we know how. We give more to each other than most able bodied friendships share because we keep each other alive and keep each other going in times that most people could never imagine.

My inner circle (no more than a handful of people) are tried and true. They love me and believe in me when I can’t do it myself. They hold me when I am drowning and they tell me how much I mean in their lives. Knowing that we are worth something to someone else when we feel like we don’t mean anything to ourselves is so important that I can not adequately describe with mere words.

Everyone needs dignity and support in life to cope with all that it throws at us but this is especially true of those who must fight for life every day and live a life that very few can imagine.

Gentle hugs,

Trish

Disconnect

For those who have had any experience with pain it is well accepted that it changes you. No matter who you are or how immutable you think you may be, after spending time living with pain it changes who you are at the core. No exceptions.

I have often marveled (even grieved) at how much I have been changed by my daily battles with pain, and various other challenges, I scarcely recognize the person I was compared to the person I am today. Even the most stoic amongst us will no doubt experience this, even if their challenges are not as noticeable or as great. It still changes us.

During times of flares and relapses the daily struggles are transformed into Herculean challenges which takes every bit of you emotionally, mentally, physically and financially to endure them. During these times I find myself feeling completely disconnected to my surroundings, my friends, my loved ones and even myself.

I have wondered if other Autoimmunes experience the same?

Like a soldier in the midst of war and completely engaged in battling the enemy, I am in the trenches for my health and fighting hard. The casualties are numerous and the first to be lost has always been my connection with my life.

Since it is so hard to explain to others what this war is like I simply don’t tell them. I have to disconnect myself from them as any explanation would be utterly lost on them. They simply can not understand what this is like for me and I can’t adequately inform them.

Much like a returning soldier who has experienced the horror of wars, there are no words to convey what it is truly like to those who have never fought, and it really only has meaning to other veterans, I can’t seem to convey this to friends and loved ones who may be curious as to how I am and so I simply say nothing. Disconnect.

After a flare or relapse settles down a little I find it very hard to resume the normal course of my days again and feel quite lost and emptied. It takes time for things to settle again and I feel completely disconnected to my normal life again.

For those that knew me prior to my illnesses taking over it is quite surreal for me to interact with them when they dearly want that the person I was to materialize and can not see that she is gone and deeply changed. They cling to those earlier memories of me which only serves to make me feel even more disconnected to them and myself.

It is often why I don’t have much interaction with them at all these days as it is unbearably sad for me at times to constantly mourn the person I was and lament the person I am now. Often the person they remember is still inside and has been in prisoned by this damaged physical shackle. I am disconnected from my past and present.

To try to reconcile the two is a mammoth task that I have not yet mastered but dearly hope to someday, if at all possible.

One way I have been able to cope through these times has come in the form of someone close to me who not only knows me on a very deep level, the woman I am deep inside, my hopes, character, personality and who also accepts my current persona and can help mend the rift and ground me when these two people (me) become disconnected internally.

When the war is raging and I become so lost I find myself free falling, spiraling, lost and without focus, like the earth is moving beneath my find and I am straining to stay upright. ]they] catch me and offer direction for which way to look. [they] reach in and grab hold of me when [they] can see that disconnection taking place and although [they] may not ever know what I am truly going through, [they] do know me.

Without this I would not be able to put the pieces back together and connect the dots alone. I just can’t do it. I hate that I can’t do this for myself but am also deeply grateful that I have someone who can in the meantime. My thanks and love for what [they] do many times must remain unspoken as there is no way to truly express it, but I also wonder if my fellow Autoimmunes experience these same things in their journey?

We all need someone to help put us back together emotionally and mentally when our physical selves are so damaged, uncontrollable and unpredictable and one of the hardest parts of these diseases is not only losing our bodies to them but also trying not to completely lose ourselves.

I hope you all have a person whomever they are. Someone who truly knows you and can help you reconnect and if you don’t have them currently I urge you to take the time to find them and give them the tools of truly knowing you on a deeper level so they can help you find your way home again even in the darkest of times.

Gentle hugs,

Trish

You’re So Strong

Whenever something difficult has happened in my life I have always been told by those I have turned to “you will be ok… you’re so strong”.

I have no doubt that they are well meaning and honest words when they are offered but the truth is that no matter how strong someone can be, we just aren’t strong all the time… And shouldn’t feel we have to be.

At my age I have encountered a lot of life events that have been difficult to cope with and although I have tried to do my best it is not possible to be a pillar of strength all the time.

My current circumstances has seen my inner strength and resolve ebb and wane constantly and with it my health has deteriorated rapidly due to the stress and uncertainty of it all.

Often times our friends and loved ones don’t realise that our Autoimmune diseases can be too much to carry already and then when traumatic events happen on top of that it can be devastating and too much to handle for anyone; even a strong person.

My mother was someone I considered a very strong, determined woman but I also saw how fragile she was and how much assistance she needed to cope with her own challenges in life. She was someone I admired for her sheer will power, unrelenting determination and courage, but like all things they have their limits and no matter who we are, what we have seen and what we have been through, we all need help.

What has surprised me during this period of my life is that the people I may have expected to help (as I have helped them in the past) have not stepped up and, conversely, the people I could not have ever imagined have offered kindness that has touched me deeply.

It occurs me that as human beings we are supposed to find strength from our connections to each other and our love for each other. We don’t have to be strong on our own. It is unreasonable to expect us to cope on our own and I don’t think we do ourselves or our loved ones any assistance by saying to them “you will be ok … you are strong”. It only compounds our feelings of helplessness and despair when we are struggling by suggesting that we are also weak for not being able to cope alone.

When I moved to this city I could never have predicted the enormous health issues I would face and the emotional, financial and physical challenges I would face. I moved for work and without knowing anyone or having family or loved ones here. This wasn’t as daunting when I was healthier, working, social and physically capable to take on all the demands that was placed on me. But with every new challenge, blow and life event it has been excruciating to deal with alone.

Human beings are social creatures and we need love, support, kindness, help, assistance, hope and care during many times in life. We rely on each other for those things and shouldn’t have to meet each challenge alone. As the world gets busier, colder, more isolated and disconnected I worry that we will lack the most vital thing we all need during tough times; each other.

Strength doesn’t come from being isolated, alone, and being told to deal with life events and suffering on our own. It comes from reaching out, helping each other, loving each other and giving to each other as much as possible.

After all, the strongest armies are made up of fellow fighters, comrades and those who will always have your back and that’s how they survive and fight on; together.

Gentle hugs,

Trish

A Humbling Time

I have always been the type to give help and support and never ask for it.

A dear friend has encouraged me to now ask for help and as difficult as this is I am going to do my best to overcome my lifelong battles and allow myself to be helped in return.

I don’t expect anything from my fellow fighters out there but will be humbled and thankful for anything you can spare.

With deepest thanks,

Trish

https://gofund.me/d5bdb354

Weathering the storm

It’s been awhile since I have written anything on my blog and it has prompted various responses from my readers and friends which has caused me a lot of reflection.

I have resolved to write something not because I want to but because I feel I should explain to those who have found my blog useful or could identify with the things I go through and feel.

Here goes.

For some time now my marriage has been breaking down and there have been many things that have taken place over the past several months that has been unbearable at times both physically and emotionally. Which is why I have not written or even told my closest friends and family.

Is this the right way to handle things? Probably not. But it is the only way I know how and what I have always done my whole life. So I am doing the best I can with what I know.

One of the things that has been difficult to come to terms with through all this is that when the chronically ill go through a marriage break down it means so much more than just a broken relationship, the spouse is also a carer, nurse and someone who knows your medical situation better than anyone else in the world.

This is what is happening to me now.

My partner was for many years someone who knew my medications, my doctors, my challenges, my symptoms and all the other things that my diseases have been in my life. Losing this is a very hard thing indeed and is even harder to bear than perhaps losing the love we once shared.

For me to turn to my closest connections and to tell all the things he has done and all that has happened may find my friends and loved ones shocked, hurt and angry but they will not completely understand the role that he has played in my life beyond that of a husband and therefore how hard it is to come to terms with.

I could never have predicted this happening to my husband and I, I had believed that we were a couple that defied the odds of illness and marital break downs. I hoped we would be able to overcome anything given what we have had to deal with. But that isn’t the case.

Does my illness play a role in all this? On a very real level, yes. It can’t not. The person I have become and how much my illnesses changed me and effects me has definitely had a part to play. Even if it in no way excuses many things that he has done. Even now I don’t feel the anger and resentment that many people would tell me that I should.

Perhaps my illnesses has even effected how I cope with this situation and how I cope life in general.

Certainly from one perspective my illness has made me see life very differently and people very differently. Chronics generally have had to accept loneliness and feelings of disconnection for most of their lives with illness. Dealing with things internally and on their own becomes the norm. That’s a large part of why I have been.

Very few of my friends and loved ones can truly comprehend what this is like for me given that each emotional hurdle also has a physical price to pay. My health has completely crumbled and I have also had to contend with the worst flares of my life on top of everything else. It also means that I have never felt more alone and broken in my entire life.

I also have been careful not to give way to self pity, desperation and futility, but it’s an extremely fine line and easy to fall into. Being my own counselor at this time and also navigate the breakdown of a marriage is so hard that I wouldn’t wish it upon anyone.

My self worth and identity has suffered too. When you have life changing illnesses you try very hard to rebuild some sort of identity again but it is never as easy and solid as when you are a healthier person. Thus this current event is very hard on my psyche and has changed how I see myself again and how I see my future.

I am not looking for pity from my readers and followers, as this has never been who I am. But I do hope that the honesty and willingness to share my experiences with fellow Autoimmunes is helpful in someway, even if there are never easy answers or solutions. Knowing that someone may connect and relate has been the main reason I began my blog all those years ago, and still is today.

Trying to, once again, pick up the pieces of my life and pull together something that can help me keep going on is incredibly hard, painful, heartbreaking and, at times, beyond my capacity is one of the hardest things to do as an autoimmune, and it’s only other autoimmunes that can possibly understand what that means.

Feelings of rejection, hurt, disappointment, betrayal, loneliness, fear, confusion and loss are all too familiar for those of us who have debilitating illnesses, but once again I find myself with no choice but to try and face it all as best I can and try to weather the storms of life … again.

Gentle hugs,

Trish

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,

Trish

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,

Trish

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,

Trish

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,

Trish.