Sometimes people have asked me why I write and what I am hoping for in my writing…
The first things that I have always wanted everyone to know is that I am not looking for pity or sympathy, I am looking for awareness, equality and justice.
Sometimes people have asked me why I write and what I am hoping for in my writing…
The first things that I have always wanted everyone to know is that I am not looking for pity or sympathy, I am looking for awareness, equality and justice.
My Type Of Friend
FEBRUARY 20, 2020
The other day I was reading an article on the list of things a real friend can and should do, and aside from one or two things on the list I would be deemed by the writer as a bad friend.
Which got me to thinking.
This ableist writer has no idea of the different types of people out there, or of any other reality other than their own, so they perpetuate this flawed narrative about friendships that can have long lasting effects; Especially for those who have health and physical challenges.
They wrote that a real friend shows up when needed. Great! This means that I can never be a good friend to anyone?! That just feeds my self esteem completely. Not!
The fact is that even though I can’t physically show up for people all the time (in fact, almost never) this should not be a measure of my intrinsic worth.
They wrote that a good friend spends time with you. Many people imagine friends shopping, driving, dining, partying, water skiing etc but nobody imagines two friends sitting and talking or watching a movie at home. This able bodied ideal doesn’t include those who don’t have the strength or abilities to do much more than be companionship!
A good friend, they write, always has positive energy and lifts you up. Sounds like a mechanical hoist and not a real person to me! Some of the best friendships I know have simply been good ears and open hearts. Someone that cares when the world seems to not care. Someone listens to the things we don’t know how to say. Someone they can trust completely.
When I was healthier and busier I was accused of not being emotionally available or too busy with life and now as I am house bound I am no longer enough fun or too boring for many people to consider interesting!
These days my world can revolve around one house, one room or one backyard but I can honestly say that no two days have ever been exactly the same.
I once read that only boring people get bored and therefore by that definition I am not at all boring and don’t think I ever will be. Despite the fact that I must face the same physical challenges over and over, day after day, I have always found new ideas, new projects, new dreams, new thoughts, new feelings and new concepts to explore. Something that these dreadful diseases can never take away.
The only friendships that I have lost were the ones based on physical abilities, friendships that took more than they gave or had very limited ability to grow and survive. Sadly, that was almost all the friendships that I had made in the 30+ years of life.
Ask yourself how many friends you would have if you couldn’t move? If you had no money? If you had nothing to offer but your honesty?
Recently an old friend had travelled from far away and although I assumed that they would not really want to spend time together or that they would find my company difficult, boring or uninteresting, they completely surprised me by spending much of their time with me! Yes. Me.
We sat on my bed mostly, talking, laughing, reminiscing, joking, consoling and simply being two human beings, together. It was wonderful.
I return to the article I read about a good friend being reliable. Well I have very different thoughts on this topic than this writer and I don’t think reliable is simply confined to turning up at events or doing some heavy lifting when moving home! Reliable can mean that no matter what day, time or circumstance you know without hesitation that you can turn to a person who will be there emotionally for you and allow you to be yourself. Completely.
Reliable can mean that no matter what you might be facing there is someone who is there and cares for you as much as they care for themselves. Someone who will be there for the dark, hard, soul crushing hours when the world is too busy or doesn’t care.
I was often this person for many of the friendships of my past. The go to person for pain, loss, struggle, misfortune and disappointment but I didn’t ensure that this was there for me too. A good friend is a two way street.
My closest friend today is someone who fights hard with their diseases and understands the day in and day out, soul crushing battle our physical bodies put us through whilst nurtures the fragile, kind, pained, loving, charming, funny, childlike, intelligent person that resides inside these shells. A friendship based on real love, loyalty, kindness, compassion and honesty. Unlike anything I have had as an able bodied person.
It is almost unfathomable to me that at this stage of my life that I see how the world looks out into the sea of humanity and it always overlooks and dismisses those with illnesses, disability or chronic struggles as being those who are simply beyond repair or the human flotsam and jetsam thrown across life’s shores. No longer wanted and cast aside. Dismissed from the landscape.
However I have come to learn that there are greater treasures which have been throw and tossed aside than can ever be found amongst the ordinary and everyday.
I have found people with endless spirit, forgiveness, creativity, coping, imagination, inspiration, fragility, kindness, true love, sincerity and hope that I have never found in everyday life. It is amongst the pained, the sacrifices, the losses, the hardship and the overlooked that you find real character and humility.
I wish I didn’t have to join the ranks of the struggling to understand what real friendships were but here I am.
As far as those people who who write about friendships and those who espouse authority on human relationships are concerned I can guarantee they know very little of what real friendships are made of and they have never had to make a life out of pain and suffering.
Real friendships are often hard to define, hard to find, and impossible to replace. But when you find one you will never know a truer thing on this earth.
One of the most important tools to survival with these diseases is having the right support and love with you as you battle the hardest fights that few people will ever appreciate. It is no surprise then that almost all autoimmunes have at least one companion animal, as they are some of the best sources of love and devotion on this planet.
I write this piece in recognition of all the little furry companions that I have ever had in my lifetime, but especially those I have had in my life since becoming deeply ill and disabled.
Their love, devotion, companionship, humour, loyalty, empathy and kindness has been beyond measure. They have given me reason to get up in the morning and reason to keep going year to year, more than anyone else on the planet; with the exception of my husband.
I really don’t know why the Autoimmune soul connects so deeply to our furry children but the answers must surely include the fact that no matter what we do, what we look like or how useless our bodies may feel to us, these furry angels never criticise, judge or stop loving us.
In my pain I have grumbled at them, ignored them and even cried my heart out in front of them but one look in their eyes and I can see that I am still loved by them just as I am; Unlike anyone else on the planet.
I often feel like such a failure as a fur mother because I can not run with them, play with them, exercise with them, groom them or provide them with anything close to a predictable day without the help of others, but from me they will get my last breath and my last penny and I hope that will be enough.
Many of us who are confined to beds or housebound would have very little companionship without the love and devotion of these angels, when almost all human beings have gone and given up on us these little darlings would never leave our side… Perhaps maybe for a moment to look out the window at the postman going past!
Their natures far exceeds that of human beings and I will freely admit that they are far better than I could ever even hope to be. Even when they steal my food or drink my tea!
The way they see the world and look at my husband and I reminds me of how we should all be; inquisitive and genuine.
The one down side to loving these angels is the complete and utter despair of losing them. I don’t think I shall ever overcome the pain of their lose and I don’t think I want to. I close my eyes and recall with absolute clarity each and every fur child I have had and lost. The pain winds it’s way through ever cell in my body. I have never grieved any human being as much as I have grieved these furry angels.
As a child they were my only companions, they were my siblings, they were my confidants. They were my allies and heroes. The period of my life without a companion animal were some of the hardest and loneliest times of my life. It is for this reason that I am adamant that I will never be placed in a care facility where animals are not welcome. Ever.
The current laws about the treatment and recognition of animals are grossly inadequate and I am sickened by a lot of what I see on the internet. However, I am also a member of dozens of animals lovers sites and not a day goes by when I don’t post some picture of my furries on social media and I am sure that all those who know me are well acquainted with my particular brand of animal madness.
My friends are treated to constant pictures or stories of my furries and I am sure even the most loyal friend is well and truly tired of my stories and endless references to my furry tribe. I don’t blame them.
However, like any true animal lover we are unapologetic and will freely admit that we love our furkids more than anything in this world. And it’s true. These are not just expressions or comical statements, I would absolutely die for anyone of them, Much the same way a mother would for her human child. They ARE my children and always will be. The only difference in my eyes is that unlike many other mothers out there I have had to mourn the loss of many of my children and be prepared to take pain of more in my lifetime.
One of my main goals and reasons for living at this point in my life is to be of service and to provide my husband and fur kids with whatever I can for as long as I can. This has seen me go through the hardest of times and the darkest of hours for over a decade now. I shower them with as much love and indulge them as much as I can without hesitation.
Thankfully this is a particular trait or characteristic I shared with my mother and at this time of my life I can recall how we both agreed that little animals give more than they take. I am glad that someone understood me on this level and it came as no surprise to me when she would not go on holidays for fear of leaving her little darlings or when she never left the house without her devoted pup beside her.
I find myself unwilling to entertain the mere idea of going to hospital and leaving my furry ones and even going for a short drive means a car load of furry faces and wagging tails. Even moving towards the door will result in an eruption of barking, crying, tail wagging and panicked dives at the door… which is more than this heart can bear.
My husband has embraced my particular brand of insanity and he is now a card waving member of the furry parent club and has even called home to say hello to the fur kids when out and about. He sleeps with at least three or four fur kids on top of him or curled up beside him and he is a deft hand at retrieving all sorts of objects from mouths and claws. We can even tell who is doing what when we are not in the room!
They have filled my life and renewed my hope more than any job, project, object, career or anything else ever could, and I am more grateful than these few words could ever hope to express. Many people have shaken their heads at me over the years, considered me completely insane and even given up on me as a lost cause when it comes to my love of my fur companions, and animals in general, but I can honestly say, without fear or hesitation, that I couldn’t care less or be less apologetic about anything in my entire life.
If made to choose between someone or something and my fur companions I will choose my fur kids any day, and twice on Sunday. And I encourage anyone else out there who shares a similar disposition to come out and let your flag fly unashamedly. It is only when we do this that animal recognition and rights can be advanced and the world can open its eyes more and more to what an important role they play to human beings, especially those of us who have lost so much through illness and disease.
Companion animals have stepped in where many people have abandoned us and for that reason they are true heroes and always will be.
There are quite a few people whom I have long given up trying to explain some important concepts because of their inability to understand and, more importantly, their inability to put aside their own agendas in an effort to better understand me or my life.
To those people I simply just nod and say no more. It really is no longer worth my time, effort and any side effects that result.
To the rest of the world I can but try to explain as best I can in the spirit of understanding and in the hope of educating others to better respect and empathise.
If you ask those of us with these diseases what some of the hardest realities to accept are I feel quite certain that chief amongst them are the loss of control of our bodies and the loss of choice in what we can and can’t do. At no time is this more profound than when it pertains to events and socialising.
I have missed out on so many special and important events in the past decade or more simply because I have not had the health or strength to do so. Whilst I freely acknowledge how difficult that must be to the person that I have had to cancel, postpone or turn down it is by far more devastating on me. I say this without malice, selfishness or intended slight.
Being the one who does not get to share a happy moment, event or make a special memory is truly and utterly heartbreaking!
As I look back on the past decade there are so many occasions that I have missed out on that I try not to think about it too often to do so can cause the most intense pain imaginable.
Missing out on weddings, birthdays, graduations, births and celebrations is a far greater loss to me than it is to the person who will still have a happy and wonderful time regardless of whether I am there or not. Therefore it is simply cruel to use such a thing to try and make me feel worse about not attending. It is for this reason that I have always not understood people’s reactions and anger when I have not been able to attend.
I have been told that “… it must be your choice…” not to attend and that ultimately it is because I “… didn’t really want to go…” that I have canceled or declined. I simply won’t respond to these accusations anymore to as it shows the complete lack of understanding of the situation and a lack of perspective.
There is a huge part of me, the inner me, the once able me, who would dearly love to travel, dance, rejoice, celebrate and be present at so many things that now suffers as a direct result of losing the ability to choose or have command of my own body and it’s capabilities.
I can no longer rely on or predict what this shell of a body can do, or will do, and this has led to feelings of ultimate betrayal and inner suffering the likes that most people can not even Fathom!
As I look back on cancelled tickets, lost money, unrefundable events, missed friendships, hurt loved ones and deep disappointments I can no longer even calculate the emotional toll that they have.
I have often called upon my husband to be the one to call and cancel as it has become an all too familiar pain for me and I simply can no longer bring myself to do it. Is this a cop out? Yes, Probably But it is a very justified one.
As a result I must keep reminding myself that I can only live for today and in the moment and this is the only way my mind and heart can find some peace in this life. Trying to plan for the future can be a disaster waiting to happen and has the potential to throw me once again into despair.
Reminding myself that I can only do what I can and by assuring myself that “… I am enough…” has been my mantra for over a decade.
Do I wish things were different? Absolutely! Do I wish my body was more reliable? Every day! Have I really tried to do things or plan things? Indeed! But nothing (nothing!) removes the fact that what will happen is beyond my control or predictable, no matter how much I may want something to happen.
As I result I have not been on holiday for nearly a decade, I haven’t had a birthday party or gone out for dinner in years. The last few years have seen health challenges increase so even the shortest outing in the car can be taxing. This does not make for many joyous events or outings and it can feel incredibly heavy and daunting.
A quick look at social media and I am inundated with concerts, weddings, birthdays and holidays that I would dearly love to have for myself too. I have had to turn away or develop a completely altruistic outlook on the world and be happy for everyone else or perish in the pain and torment.
The able bodied world is so steeped in the ideals of free choice and personal control that it is almost pointless trying to suggest otherwise, particularly if they are deeply committed to their narrow view of the world, and attempts to explain anything that contradicts them is quickly rejected. Thus I have had to develop extremely thick skin and robust principles of my own. Today those principles are best described as ” ..I can not invest in the assumptions and appraisals that others make of my life, my abilities and who I am, but rather become deeply committed and confident to my own truth, strengths and self belief…”.
Ultimately when it comes down to the freedom of choice than I must always choose to believe in me.
Another painful part about this life is the difficulty trying to resolve entertaining people at home and yet struggling to do so; especially those wonderful people I would like to see and be around.
Over the past decade the number of visitors and guests we have had in our home have declined considerably such that it is rare to see anyone come to our home aside from the postman and door to door advertisers.
It is hard to explain to people, especially people that you love, that most days it is a real struggle to even move let alone entertain friends and loved ones. I often don’t want to be seen at my worst because of the embarrassment I feel about many of the physical issues I live with. I know I shouldn’t and that only makes me feel worse because I do.
It would be wonderful if people who visited me were instantly comfortable enough that they could fix themselves a drink, lounge around beside me, and look after themselves whilst we spent some precious time together but it is highly unlikely that people will do this, and I don’t blame them at all. However I often don’t have the strength or ability to fetch refreshments, keep conversations lively and stimulating, and entertain people as I would dearly like to.
The truth is that with these illnesses you either have a small group of amazing people who will make themselves at home and become in tune to your physical abilities or you live a life of isolation and loneliness.
Today I have a handful of people whom I can rely upon to feel completely at ease and have this amazing ability to gauge “the room” and know exactly when to chat at length or cut short their visit and let me rest. They are not shocked by tremors, tears, aches, blindness, facial droop, slurred speech, fatigue or general malaise. They don’t care if I am in my best dress or in my pyjamas. They don’t care if I talk a little or if I just listen. And they don’t care if we are sitting in the garden or holding hands while I lay in my bed.
Those few people are just pure gold to me.
There is no handbook whereby people can learn how to visit with an autoimmune friend and so I never blame people for feeling awkward and opting out of visiting altogether. I think it’s often best to not visit if you are not really committed to understanding their situation a little better. For the purposes of helping both parties I thought I might write down a few handy tips and suggestions.
1. Call first. This is essential. There is no point in dropping in on a chronically ill friend/loved one unless you both want to be disappointed. Call first and be comfortable with a “sorry, not now” response. Better still, text the person so they don’t have to speak if they are not up to talking or if they feel awkward about saying no. The truth is that your chronically ill friend really does miss you and it hurts them to have to say no, I guarantee it!
2. Intend on keeping your visit short unless your friend can manage more time with you. It is very hard for healthy people to understand that speaking, listening, concentrating and participating uses a lot of energy and this is something that most chronically ill people have very little of. Almost none. After half an hour of Interacting it can start to take a real toll on the person and pain and fatigue can start to overrun them.
3. Be comfortable at making yourself at home. Often it is beyond the abilities of the ill person to fetch and carry drinks, snacks and showing people around, therefore it is so important to just try to make yourself at home as much as possible and be self catering. Your sick friend will be immensely appreciative; more than you can ever know.
4. Don’t feel as though you need to talk about illness or anything health related. We live all our lives with these challenges and struggles and for a short time we would like a break from discussing them. A polite “how are you feeling today?” Is sufficient and a good way to gauge the time you may have together. I for one hate retelling my health struggle over and over so I much prefer to just not think about it for awhile and just hear all about another persons reality and news. That’s my personal preference anyway.
4. Don’t make future plans with the person as often times they can become things that can break the persons heart if health is not going their way on the day. I can’t tell you how many times I cried from breaking plans with somebody and then took months to get over the pain of it. Such things can trigger depression and feelings of inadequacy in a second. Simply say something like … “it would be nice to go to the movies one day when you are up to it,” … this is more likely to make the person feel included and valued.
5. Check in regularly to see if the person is coping during the visit. A quick “are you feeling tired?” Is the best way to gauge how your visit is going. If your friend says “yes, I do feel tired now” don’t take this personally or consider it a rejection. Half an hour with you is probably a treasure that your friend will not forget in the days (months) to come and you may even be what keeps them going through the most painful times in their struggle. It may be just a visit to you but it can mean the world to them.
6. Learn to be completely honest with your ill friend. Speak honestly and openly about your friendship, your challenges, your lack of understanding, your life, anything. Openness is the tool that will ultimately help you navigate these times. Illnesses which change a persons life forever are not for the faint hearted and take a lot of courage and honesty to get through. I have found that I must always be honest and I can no longer tippy toe around subjects or issues anymore. I simply don’t have the strength or energy. This can either solidify a friendship or break it depending on the bonds you share and only time will tell you both which way it will go. I, personally, have lost a lot of friendships and relationships that I thought were stronger and deeper but I have learned over time to simply let it go and try to find peace at each stage.
7. Try to find the value in your chronically ill friends other abilities other than their physical ones. Constantly needing your friend to be physical, do things for you, go places, and measuring them against a physical standard is a painful and cruel thing to do to someone with disability and struggles. It is kinder to simply let the relationship dissolve than to require things they can not give anymore. As a society we tend to overlook the other aspects of a person outside of their physical abilities or attributes and illness hold a microscope to this very quickly. Friendships with the chronically ill must be based on deeper things like personality, empathy, feelings and appreciation beyond what they can or can not do.
8. Remember that a visit with a friend can mean they will need days to recover. Every little action and interaction has a physical toll. Every action. Every day. If your chronically ill friend or loved one is prepared to hurt, suffer or struggle just so they can spend time with you please, please, please see this as the great honour and act of love that it is. You simply can not put a price on this kind of gesture. It is worth more than a hundred visits with healthier friends.
9. There is nothing better than laying in bed with a friend and watching a movie or documentary with someone when you are chronically ill. If this is your idea of heaven too then make friends with an autoimmune fighter and you will have a friend for life.
10. Even if you don’t see your friend very much anymore always remember that they are missing you as much as you are missing them too. Sometimes more.
I hope these simple suggestions will be helpful the next time you have a chance to visit with your chronically ill friend and I wish someone had told my friends and loved ones these things over the past decade or more.
It is hard to have your friendships and relationships change when you have a chronic illness and it is always very hard losing friends but it is worth more than words can say to have the right kind of friendships that will last through all the ups and downs and make the struggle a little easier.
As a child in the 70s, and born into a rural family, I was raised to believe that if you were feeling sad or upset due then you needed to go off alone and ‘deal with it’. My parents would either ignore me or quarantine me until I was able to act in a way that they approved of and made them feel comfortable; with minimal disruption to their lives.
I was also taught that I had to deal with my own problems and concerns and not to ‘bother‘ other people. Visibly showing pain, worry, sadness or any emotion was not acceptable and seen as a sign of weakness therefore I had to do such things behind closed doors.
For those who share a similar upbringing as mine we would tend to grow up and internalize all the pain and stressors in life because we are taught that ‘sharing‘ or asking for support is weak, inappropriate and a sign of failure.
It is little wonder that so many of my generation can drown in stress and depression, and as adults we have struggled to ever share our burdens or ask for help, even from those closest to us.
Men were quite susceptible to these difficulties as society has long told males that it is unmanly to seek help or to confide in others. This has caused so many difficulties with intimacy and relationships that many just do not survive this hurdle.
However, it has been my long held belief that when we are struggling, or when we have pain and emotions which are hard to deal with, that is exactly the time that our loved ones need to be present in our lives and by our sides. We need to know that support is there when we need it most and it is not going to walk away or dessert us.
No child should ever have to feel alone in pain or should ever feel that their struggles are a sign of weakness or failure. Those children grow up to be struggling adults with a string of broken or superficial relationships in their wake.
As an adult I have been in far too many relationships where one or both of us struggled to reach out and be a support to the other during hard times, and this was a major factor in the ultimate demise of those relationships.
Speaking for myself I just didn’t have the experience and practice of speaking out and sharing early on in life. I had been taught to build walls and barriers to my pain and emotions and I learned not to trust anyone or rely on anyone.
The message that I was not good enough to help or to support became the backdrop of my relationships and helped me choose partners that were not worthy of me.
If we can’t trust our family with our emotional support when we are growing up then who can we trust? If we can’t rely on our primary care givers as children then who can we rely on as adults?
Having our emotional needs shunned at an early age can also lead to fear of rejection and depression later in life. These are very dangerous burdens to carry around through life.
Many of my generation still struggle with these deep seated issues and it is a very hard road to travel in your adult life, and even harder to try and correct.
But it can be done.
The relationship I have now, despite the fact that I have health challenges, has been tested and I have forced myself to open up and talk about my struggles. I required my partner to do the same so that we were prepared to take the same risks and be the same refuge/shelter for each other… despite being incredibly hard it has also turned out to be incredibly rewarding.
Taking these emotional risks has enabled us to take strides forward and also helps us navigate the difficulties that life constantly throws our way. A true partnership.
It seems strange to me now that this is what I have always looked for but I didn’t realize how truly life changing it could be. I have often said that I never needed a perfect partner/ spouse in life but I did need someone I could open up to and share anything with, and they have that from me in return.
Reaching out is the hardest thing I have ever had to learn how to do and it is far harder than living with these diseases I have but I believe it is probably the most important thing I may ever do in my life.
Where Are They Now?
One of the hardest realities to come to terms with as a chronically ill person is the decline and disappearance of people from your life, especially those whom you may have been there for and helped in the past with love, support and money.
I discussed this with a friend just recently in a very sincere and meaningful way in order to try and make sense of it all.
Being an empathic person has always predisposed me to wanting to help others whenever and however I can. Whether they were friends, family or strangers, I always wanted to make a positive difference in some way. Perhaps I didn’t always choose the right way of helping, and I am certainly not suggesting that I am some sort of saint either. However I do believe that I have endeavored to be a kind and generous person in the course of my lifetime.
I also believe that my kindness and generosity developed from out of my own challenges and struggles and my understanding of what it is like to endure difficulties on my own. Kindness can be such a rare commodity when you are going through hard times of your own. Thus I began to want to be one of those people that offered a safe place during the storms of life.
It didn’t always go so well despite my best intentions.
Regardless though I found myself somehow finding my feet again after a difficult encounter or being taken advantage of, determined to believe that there would be some people that would prove their worthiness one day and justify my hopes and efforts.
I don’t believe I ever did anything with the expectation of being owed some kind of debt by the person. I didn’t want money or praise in return. I only hoped that my selfless acts might one day lead to good karma and the sense that I lived a good life and helped my fellow man in times of need. I hoped that it would somehow contribute to the overall betterment of the world and society.
I have to admit that I feel quite disappointed and disillusioned today.
As I look back and remember the many times I have given my time, heart, feelings, money, efforts, assistance and strength to many of the people in my life I am forced to ask myself the hardest question of all … where are they now?
The simple truth is that they are not in my life now and they don’t bother to check in or be a shoulder for me in my own times of need… There isn’t even the occasional greeting or casual enquiry from any of them.
Did my efforts mean so little in the grand scheme of things? It really does seem so.
As I look over the things of the past I am determined to learn from these experiences and that is the only reason I think of them now. I don’t intend to become older and bitter by these experiences but I do hope to become wiser and, hopefully, more at peace.
As I spoke to my friend she agreed emphatically with much of what I had said and had had some similar experiences of her own.
This actually made me feel even more disappointed.
I said to my friend that I didn’t see myself as having a finite amount of love, kindness, care and empathy or that I was ultimately going to run out of these resources; despite having given so much of these things away in the past. I knew on a very real level that their actions would not rob me of these things from my life entirely. Even the large amounts of money that I had given in the past did not mean that I was waiting for a reimbursement or Cheque to appear magically in the mail.
Money had always seemed to me like such a transient and unstable commodity during a lifetime anyway because we can never tell what is waiting just around the corner. It is also true that money can’t buy you the type of things we truly need in life like love, respect and acceptance.
I shared with her the times that my acts of charity and setting up charitable groups had even resulted in ridicule and betrayal. Not at all the outcome I could have ever imagined!
So what was to be learned and what should I take away from all of this? …because to me learning and wisdom are the most important outcomes of all.
I have to admit that today I have become far more introverted than ever and have withdrawn myself to a great extent. I am even more self reliant than I ever was and I am determined to not go through the pain and disappointments of the past. Although I am comfortable with the concept that life is struggle and that this truly is the underlying message of the human experience, but I also believe that we owe it to ourselves to not make the struggles even harder for ourselves so we must endeavor to learn the lessons as we travel through our lives.
Today I find that I have had to build higher boundaries around my precious and loving resources. My husband has been a grounding and guiding force in my life and has shown me how to stem my generous impulses, which in itself is an inner battle to override my own nature. I rely on him as a sounding board for so many of my decisions now as he has had to be there so many times in the past to help pick up the painful pieces and heal the emotional scars.
One of the largest breakthroughs that I made in comprehending all of these lessons is when I realized that not everyone has the heart, feelings, depth, kindness or spirit as I do and therefore to assume that they will treasure or appreciate the things I do is an incredibly large mistake and illogical and incredibly naive on my part.
Assuming that people are as loyal and loving as me may even be narcissistic in some way? … I don’t know.
Alternatively I have had to learn how to love myself and use that generosity and kindness on myself in positive ways and protect myself far more.
Learning how to do that at this stage of my life, whilst battling some of the most painful and frightening physical challenges, has been incredibly difficult and there are many days I wonder if I can ever really do it. Whenever I find myself asking if I can actually achieve this goal I am also reminded that I simply have no choice.
At this point on my life I have come to realize that there are a staggering amount of things in life that we have absolutely no choice over, despite all the positivist slogans out there insisting that we are in control of everything. Learning how to live more peaceful seems to be one of the things that we do have some choices and control over.
My aim from here on is not to carry around sadness, hurt, confusion and pain for all those who have disappointed me and disrespected what I have done, but rather the goal now is to let go of all of that baggage, release the confusion, lean into recognizing the depth I have and the soul I possess (despite it all), being proud of all that I have endured and, finally, being inspired to learn from the past.
I am truly, deeply and forever grateful for those handful of people who are in my life now and who continue to stand by me, no matter what. Those that have lost me or walked away could never truly have really valued me in the first place, and therefore I see myself as ultimately far better off.
I believe that at some point in your fight for life with chronic illness you will encounter feelings of “burn out” where everything feels heavy, futile, exhausting and you have had enough. No matter how positive you have been, and try to be, the fact is that you can’t sustain constant enthusiasm and optimism indefinitely.
And you shouldn’t have to.
For nearly a decade I was filled with positivity, dedication, optimism and I wanted to spread hope and advocate for all those who shared my struggles. I set about making changes and raising awareness with stoic determination until the constant battles with illnesses and people started to slowly erode me.
My idealistic bubble began to burst with the harsh realities of life. My efforts began to feel futile and I felt that fellow sufferers either appreciated my efforts, were indifferent of my efforts, were critical of my efforts or even attacked my efforts. Nothing went the way I had imagined it.
Healthier people would sometimes welcome the insights I was offering but generally they ignore or feel indifferent (even annoyed) by my efforts. The backlash has been quieter and concealed but strongly felt nonetheless; like running into a brick wall.
Political correctness might have made some impact in quieting people’s public voices but it has not changed their thinking or emotions towards chronic sufferers or Autoimmune warriors. We are still regarded with suspicion and as attention seekers by the majority of healthier people.
It’s easy to give up hope.
I have left a lot of autoimmune support groups, even those that I was instrumental at building, due to my declining health and feelings of futility and disillusionment. The same worried questions and painful feelings keep coming up time and time again from within the support groups which only feeds the feelings of helplessness and frustration.
It all feels so overwhelming and unfair.
The hopes that I once had of fighting for justice and changing the world for those of us with these debilitating diseases and physical challenges have all but vanished. It feels as though I have been very naive and foolish and have had to face the harsh realities of life and the world.
I can now see that this world is willing to embrace and accept the plight of childhood illnesses and those with cancer and critical care needs but has very little empathy or compassion for those with long term or chronic illnesses, despite the global trend towards chronic diseases and illnesses.
I still don’t really understand why.
I have come to see these feelings and this phase of my life as “burnout” from battling constant pain, endless symptoms and struggles that I have emotionally “resigned” myself to a place of quiet acceptance and retreat. I want to avoid deeper and more painful feelings of hopelessness by “looking away” and retreating further and further into myself.
I feel silenced yet pleasantly numb at this point and use all my willpower and strength to ignore a lot of what goes on inside me now. Yet even this can be incredibly taxing. I have decided to only consult with my specialists in life or death circumstances as all my efforts and trials of medications have not been able to stop my steady decline over the years. Although many doctors would label me a “bad” patient the reality is that I am simply a “tired” patient.
I know on a very real level that all of these feelings are normal and valid for someone who has fought pain and disability for a decade now and I am sure I am not the only one. I see my husband and carer looking and feeling very similar as me. Long and sleepless nights have taken their toll on him too. Seemingly overnight he and I have aged dramatically and in desperate need of relief and levity.
I can’t help but feel responsible for the impact I have made on my husband’s life and health but he has always assured me that his love has only deepened over the years, and for that I am truly grateful. He is the only man I have ever known that has given more than he has taken and with a great capacity for love and devotion.
I have certainly gathered a lot of emotions, learning, maturity, empathy, understanding and wisdom over these past years that I am doing my best to now put into some order and utilize as best as I can and I feel as though this is all I can do, and will do, for now. I have decided to still write and document all this in my blog for my own benefit as well as a sincere wish that it may help someone else going through the similar experiences as me.
Like a forest which has been devastated and decimated by a fire I must now regrow, renew and rebuild what little I have left and hope that I can return to a stronger place again. What that can and will look like will be a matter of time but I will do my best and in the end that all we can ever do…
Probably one of the hardest conversations to have when you become very ill and disabled are those around money and finances.
When people first become sick and ill often their first thoughts will go to their jobs, careers, incomes and security. These are very important to being able to maintain and sustain our lives. It is vital that we try and support ourselves and it is often for these reasons that we feel the most vulnerable and alone.
I was extremely worried what would become of my health and my relationship when I first become very ill as I was the primary income earner. It was a truly terrifying prospect and my husband and I did our best to show courage and take things one step at a time.
It was quite surprising to me that when I spoke with friends and family back then their prime concern was for my financial situation more than my health prospects. I recall that it was both strange and sad to as I look back. I felt that my health and how I was feeling emotionally about all that was happening to me was far less important than how I was going to earn money or support myself.
Some people even started suggesting ideas of ways that I might be able to work from home and do some things from bed, this was even before they knew what limitations or symptoms I was experiencing. It was clear to me how society rated my worth and value.
As the months wore on some people asked me when I would be returning to work and what my plans were to earn a living. Sometimes someone would suggest welfare payments and how then caution me how difficult it would be to access such benefits. I recall that I began avoiding even speaking to people as it became extremely predictable what they would say despite the fact that they should have been aware of how painful and stressful these topics were.
Another interesting point during these times was that despite financial concerns being the prime topic of conversation to those who seemingly closest to me, not one offer of support or assistance was ever offered. Ever.
It was almost like people dreaded the idea that I could or would become dependent on their financial support despite the fact that I, myself, had given aid and assistance to many people during the course of my life.
All of these things made my husband and I even more determined to never seek help from anyone and never to discuss money to another living soul. We would do whatever we had to, sell whatever we had to and go through anything necessary to make a life on our own.
And to this day we have done just that!
Oddly enough that after several years of coping by ourselves, that a common remark from people was “how on earth do you manage?”. Their questions seemed far from that of genuine concern or admiration and were more about wanting to pick up some tips or ideas for themselves. Curiosity more than kindness.
As the years passed we were extremely proud of our own resilience and tenacity and how we had managed to solve many of our own struggles all on our own. Careful planning, budgeting, research and good choices were slowly paying off. We also reminded ourselves that if anything should ever change or tip the scales we would always be prepared to sell everything and live as meagerly as we had to. No exceptions.
It obviously was beneficial to our circumstances that neither of us drank or smoked. We rarely went anywhere. We didn’t eat out. We never went on holiday.
When you are facing the daily battles of moving, breathing, eating and basic functions like this it becomes no real sacrifice to forgo luxury homes, modern fashions and expensive holidays. It was surprisingly easier to imagine any adjustment that might be necessary as we became increasingly grateful for any and all the small things in our life. It was as though only the healthier and able bodied people were the ones who were more obsessed with such things and are always wanting more and more.
As an ill person I found I craved simplicity and minimalness. Achievements and validation became a deeply personal thing and whatever we did or whatever we succeeded in was now kept solely between us. We lived outside the understanding or comprehension of most human beings and it became easier and easier to adjust.
Although over the last decade we could never have anticipated the number of people who would come to us for assistance and accept our charity and support despite knowing our personal circumstances and health status! It was truly amazing.
Those that were disparaging and suspicious of us financially were now sharing their tales of woe and gladly taking the help that I felt compelled to offer as an empathic and caring person. Even those that had suggested to my husband to abandon me due to my health and perceived reliance on him were taking money, gifts, help and support from us; me in particular.
Through careful planning, some risk taking, restructuring and research we have managed to keep afloat and have never sought help from anyone. Especially anyone supposed to be closer to us. It is one thing that we are acutely proud of and protective of but also makes me incredibly sad that this is how the disabled and chronically ill can be treated.
Over the past decade I have read, seen and heard the way people describe the welfare and support of the sick and disabled. It is deeply disturbing the way we can be demonized and called leeches on the social purse after many of us having given and contributed in our taxes and insurances. Especially when we have done nothing to deserve such judgements.
Every disabled person and autoimmune who has been forced out of their careers and financial security would give anything to return to the work force. Anything. We go through endless pain, medications, suffering and side effects for the chance to have our old lives back and in return we face an epidemic of public scrutiny and name calling.
As more and more money is spent on politicians, arts, entertainment, sports and many other areas it is difficult to understand why human life and disability has been deemed the lowest of concerns and priorities. It seems society always needs to demonize those who are least able to fight back or stand up for themselves. It is sad to see the fate that awaits an aging population at a time when there are more and more incidences of mental health problems and widening social imbalances.
Even over the past decade my husband and I have donated, assisted, supported, bought gifts, funded and helped all those we can based on our caring natures, love and empathy. I have always considered people’s personal circumstances and done my best to give of myself even when I have had so little to give, physically. However there hasn’t been a moment that my husband and I have felt that same support in return or regard for our unique struggles or challenges and we know we never will.
Over the years we have come to realize that, as with all things in life, people never appreciate anything until it happens to them. As such we have weathered the scrutiny, comments, judgements, opinion and suspicions of others whilst taking comfort in the fact that we have always done our best and faced challenges many can never comprehend. These days we often have people coming to us for advice and support despite having never received it ourselves. A bitter irony to accept.
I write all this in the hope that one day this may assist my fellow Autoimmunes and chronic fighters and that we will be shown the consideration and respect we so richly deserve.
Even if it doesn’t happen in my life time, I hope one day people will appreciate and see the true worth and value that chronic lives have and not simply see us as an unnecessary cost or expense.
I realized something very important about myself in the last several days and it is quite simply that for most of my life I have been judging myself too harshly and overlooking many things I should be proud of.
It seems such a simple thing that I should have been aware of and even been trying to stop myself from doing all this time. But never did I truly realize the extent to which I had been over criticizing myself and looking down on myself until my husband mentioned it in passing.
I also realized that these judgmental voices are simply those that were put in my head from my childhood and they grew to be powerful forces all my adult life… They are incredibly destructive ones to try and share a chronic life with!
As I was doing my daily browse across the social media platforms and unconsciously comparing myself unfavorably to all those who people who are working, holidaying, getting fit, going out and generally living their lives, I would always be left with the searing pain of always not feeling good enough and not achieving enough.
The voices of my youth were clear and loud.
It is the emotional equivalent of putting your hand to a flame and being burnt over and over again. Never really being able to stop yourself. Always going back for more.
I have always envied those who were constantly proud of their accomplishments and were perpetually pleased with everything they did and everything they were, no matter how small. Such self esteem! Such confidence! Such bliss!
The other night during the darkest hours of 2 a.m. I started returning to the emotional flame again and asking myself “what have I to be proud of? What can I ever enjoy about my life?”
At that time my husband woke and saw me laying there in my usual silence. He slowly sat up and we started to talk.
He reminded me of the day he met me and how I was this young 30 something trying to work full time and do a full time law degree at the same time!.. And I was passing!
Few people could fathom what an effort that requires; until it had became too much to juggle and my illnesses were stirring away in the background.
He reminded me of the way in which I travelled to another country on my own to holiday and explore. Few people would even consider doing such things, but I did it and enjoyed it. He reminded of the bravery needed to step on the plane and go to a large city, to a job I had never done before, to a company I had never worked in before, without a home, without knowing a soul and to take on a management role. No support. No safety net. No money. No margin for error.
And yet we made it.
He reminded me of the way in which we handled losing so many of our closest loved ones in one terrible year. Four of our closest loved ones gone and yet we kept on going and working. And how we also moved cities again and new jobs with only each other for support.
And yet we made it.
He reminded me that since becoming terribly ill and battling so many physical challenges I still managed to carry out international I.T. Projects, travel overseas (wheelchair and all), start my own blog and advocacy page, renovate our home, start support groups for fellow sufferers, develop my artwork and enter art shows, keep us financially stable despite not being able to return to work, imagine and develop businesses, write guest pieces for health journals, rescue many shelter animals, generously help and support friends and loved ones, despite suffering unimaginable pain on a daily basis.
He reminded me that the very fact that I was still fighting on after over a decade of pain, suffering, rejection, loss, cruel comments, judgements, medications, treatments and side effects that I was still here and I hadn’t given up, been institutionalized, suicided or become hardened and unloving. He said this was amongst the most amazing achievements he had ever known. That many people will ever know.
The voices in my head never let me see all this until now.
Chief amongst all these achievements, in my eyes, is that we have worked together to create a strong, happy, fulfilling, loving, supportive, rewarding home and marriage that has withstood hardships and challenges that many able bodied relationships rarely survive. Even stronger than the relationships I grew up with in my childhood. We have done so without a moments support, encouragement or mentoring.
We did it together.
Often as chronically ill or/and disabled fighters we see ourselves as who we aren’t and forget about the many things we are. It is for this reason I have decided that every day I will devote time to seeing things and honoring things about myself that I never did before, until the voices become quieter and hopefully a new voice will have a chance to be heard. Finally.