Health Care

The other day I was returning from an MRI and I made the very sad realization that most of the painful and sad treatment I encounter these days is from the medical profession and health care practitioners.

Let me be more clear…

when I look back and think of the times that I have had a difficult and painful encounter, since being ill, it has almost always been whilst attending a scan, a doctors appointment, a test or some such medical procedure. It seems almost completely contradictory to what we should expect to receive from our health care systems!

So many times I have left in tears or mystified by what I have encountered that it is now commonplace… and there is absolutely no consistency from any health care areas. I recall having been dismissed, ignored, prodded, pushed around, spoke down to, hurt and having my time wasted on more times than I care to mention. I am now at the point where I will do anything to avoid going to a specialist, scan or hospital! …Even endure ridiculous amounts of pain!!

Why has it become this way?

Time was that I thought the worst reactions and treatments had come from unthinking people on the street or uncaring family and friends, but they are few and far between these days as I don’t associate that much with those whose behavior I no longer deem worthy, however, when it comes to needing to attend various doctors appointments, annual scans and to carry out tests, we have no choice but to submit ourselves to the various systems and institutions that we should be able to rely on to provide us with patient care. Unfortunately though this is where we can be hurt the most and where we are the most vulnerable, because there is an expectation that they are aware that we are not well and that we need a level of appreciation for our circumstances… Often this simply works against us and only makes it far more upsetting when we are treated poorly.

After a decade of trying to navigate the health care system, see doctors, attend tests and scans, give blood, receive treatments and investigate all the issues and problems that I have encountered I can honestly say I am well and truly over it all!

But how can I be an advocate when I feel so completely helpless and exasperated by chronic care and autoimmune treatments? … That is my constant question these days.

I am painfully aware that the majority of chronic sufferers and Autoimmunes feel exactly the same. Even those that were former doctors, nurses or other such roles, they have been put through the same mill and been mistreated, neglected, left in pain and feeling abandoned. It’s just not good enough!

The worst part is when my fellow Autoimmunes have spent countless time and money to try and diagnose or identify a difficult and life changing illness only to be left undiagnosed and in limbo.

Undiagnosed equals untreated in the world of illnesses and diseases! It also means living under the cloud of suspicion and isolation and it’s simply not good enough!

Many of us can learn to live with the pain and emotional scars that being treated cruelly by a friend or family member can cause, after all it can also be quite liberating to find out who really loves and cares for us, but to have to endure feeling abandoned or even mistreated by people whom we pay good money to care for us, and treat us with respect and dignity, is completely unfathomable! They should know better and they should also be very familiar with how chronic illnesses and autoimmune diseases can behave.

If the medical profession can learn to adapt and respond to those patients in palliative care and other branches of medicine then there is absolutely no reason why they can not adopt similar caring practices for those with chronic and life changing diseases!

I don’t want to admit that I no longer regularly want to go to doctors appointment, that I avoid scans and MRIs that I linger in pain and disability, that I am consistently late in having my bloods checked and that now I simply endure something rather than have it checked or scanned. I do not encourage my readers to do this so why am I doing it?! The truth is my last MRI was excruciating, my last specialist appointment meant waiting in pain for over an hour and a half, my last steroid joint injection really didn’t give much lasting relief, the last biologics I had made me incredibly ill with the side effects and every new doctor and diagnosis is an ordeal beyond description! I just don’t want to do it anymore! And so do many of my fellow Autoimmunes… and it’s not good enough!

Perhaps the best thing I can do as an advocate is to be honest. To say it’s not good enough. To care about my fellow fighters and to keep spreading the message that we need better support and understanding from our health care systems and from the world at large.

Perhaps that’s what advocates do?!…

gentle hugs,

Trish

A Weighty Issue

As a child of the 70s I grew up with the constant pressure to be a certain size and look. Starting with my family, I was always subject to derogatory remarks about my looks and weight.

I am sure there are so many women out there who have a similar story. Regrettably.

Back then it was predominantly a female struggle and many women went on to develop life long eating disorders and psychological challenges… So incredibly painful and unnecessary.

Instead of developing strong self esteem and learning how to be truly loved and accepted, many of us didn’t get these messages in our early childhood and it is so much harder to learn later in life. Even harder if you find you are also burdened with an Autoimmune disease.

Having mobility issues, pain when moving, eating struggles and medications that change your hormone levels and metabolism can amount to weight gain. It is far more common for autoimmune sufferers to experience some noticeable weight gain than those who do not.

But what can we do?

Many women of my generation can have a very tough time dealing with this additional emotional struggle and the impact on their self esteem. Some have even decided to stop taking their meds due to the chemical influences it has over their weight. I always feel particularly worried for those who make these choices because I never know what will happen to their health as a result, they can’t know either but they don’t want to address the weight and looks issue. Such a hard choice to make for them.

The painful pressure doesn’t just come from unthinking friends and loved ones! No. It also comes from some doctors who should know better than to speak so cruelly to their patients. For example, I wish I could count all the times I have heard or read stories of fellow fighters who have been told –

You are looking really big now. You will make it harder on your joints and body! You need to exercise more!!

This is particularly cruel when those same doctors know exactly why exercising is so difficult and how the drugs have changed our hormone levels. It is the same as victim blaming and simply isn’t good medicine.

A much better way would be to discuss a plan which might include some diet modification, drug lowering and alternative means of movements and exercising.

No chronically ill person deliberately sets out to make their lives harder or more painful. It would be helpful if this was remembered. In fact, I urge fellow Autoimmunes to seek alternative medical help if they are being mistreated on this issue. A doctor is supposed to be your Allie in health and not your enemy.

Nearly a year or more ago I found myself mysteriously losing weight and having pain in my abdomen, again. Since this is not unusual I simply endured it. My weight has always fluctuated over the past three decades and so I don’t tend pay too much attention, until I couldn’t ignore the pain any longer. I had lost several clothes sizes from a 14 to nearly a 10. It turned out that I was to receive yet another diagnosis! EPI exocrine pancreatic insufficiency. I shake my head when I think of the endless list of issues now. I hardly need more!

I now take creon tablets and must again modify my diet. And now I have noticed that my weight has started to increase. With the addition of several episodes of prednisone loading, I am now nearly a size 12 – 14 again.

In the past I would have been frustrated and saddened by the lack of control and predictability of my weight and in my mind I would have replayed all the tormenting and cruel remarks of my youth… but this time was different.

Earlier this year my husband experienced his own weight gain and he was also brutally teased as a child, since becoming my carer and finding himself completely alone in his challenges he has experienced a great deal of personal growth and changes. I look it him today and he is nothing like the man I first met. He has a strength and depth no one could have ever predicted. So… when he noticed his own weight gain he simply said out loud

I like myself now and nothing is going to change that. Not even stupid pants!

I can still remember his smile as he tossed out the old pair of jeans and looked for something else to wear. I was in awe. Complete awe. What confidence! What self love! I wanted that for myself and It seemed I was going to learn from him.

In my eyes he never stopped being the wonderful, attractive, kind, courageous man he always was, even with a few more pounds. So why have I never seen that in myself? I only ever heard the voices of my family and taunters… it simply wasn’t good enough for me anymore!

So fast forward to today and my increased wardrobe size… today I made my first real steps towards self love and simply smiled and put on something else. These days I see my true value more clearly. Today I recognize the things that really matter. Today I was kind to myself and I hope tomorrow it will be even easier to do.

I won’t deny vanity and social pressure is more prevalent on women and the need to look a certain way has been going on for centuries, but I also realized that I can at least start seeing myself differently and make some personal changes for me today; and I am determined to do it!

With my husbands help we have reorganized our wardrobes. We are throwing out and donating what doesn’t fit, and we won’t feel shame about it anymore. With his help he has shown me what true self acceptance is and I am making headway day after day.

When I look at my friend picture on Facebook I realized that I have always been drawn to look at their eyes, their smiles and then, finally, to see what is happening in each picture. I am looking to see their happiness and their joy in life and not the size of their waist and their thighs, so why shouldn’t I look for the same in my own pictures and my own life?

It’s a new day for me and I will also add that my husband and I also make sure that we eat plenty of healthy meals (salads, vegetables, fruit, lean meats and smaller portions) so we are doing what we know we should in our hearts and minds. Sometimes my health means some meals are beyond my control and I can’t eat or must drink supplements etc, so I do what I must. It’s a day to day process. We almost never eat out or get takeaway and we allow ourselves the odd indulgence because we know it’s important too.

We our nearing 50 and so our bodies are changing. Our weight, Our skin, Our hair and Our abilities have changed but thankfully our ability to love and respect ourselves has only changed and strengthened.

Gentle hugs

Trish

Talk Time.

Over the years I have been asked all different types of questions about my diseases and absolutely nothing surprises me anymore! From the personal to the bizarre and everything in between. Nothing embarrasses me or shocks me anymore. I am actually quite surprised how calm and detached I can be at times as they can often be quite personal and challenging topics and conversations.

Having said that I don’t ever feel I owe anyone answers or insights into my personal life, so I always feel very comfortable in showing boundaries to various people as I feel they are warranted.

This is a right, and a skill that many autoimmune may have to develop over the years of illness. For example, some crohns sufferers who must wear a bag don’t feel comfortable at all in whipping out their bags for a curious enquirer, and yet some do. It’s entirely personal. Sometimes we forget we have the right to set boundaries we are comfortable with and that we should!

No one has a right to know everything that is happening to our health unless we choose. If people are committed to being suspicious and doubting then it is unlikely that anything you say will dissuade them of it. It’s not the sufferers job to try and change them and it may even cause us stress and fatigue.

I will often adjust what I tell to the person I am telling. A fellow sufferer is a different scenario to someone who I have just met in the street who casually looks at me and says “…so what’s wrong with you?” More often than not this is exactly the way I am questioned and it isn’t always said in a kind or respectful way. Since much of what is happening to my body is happening inside bones, muscles and nerves, people don’t see it and often they are curious, or suspicious, of what is happening to me, although I have to add here that it is entirely not their right to know, just as I don’t see what is happening in their private life or financial situation and it is not my right to know either!

Few people respect this logic when it comes to someone with an illness that they can’t see or a disease they don’t understand but they should and can.

I have developed a fairly good filter now so that I can generally tell within the first few seconds what I prefer to say and explain. The biggest factor in this decision can be explained like so…

…if someone asks me out of genuine interest, care, respect and a desire to understand something I will generally oblige them. But if I ever suspect that they are asking out of rudeness, interrogation, disinterest, malice or any other similar tone I will be quick to dismiss them in the manner they deserve without lowering my own personal standards. What most people (friends, strangers, physicians or relatives) don’t realize is that Autoimmunes can almost always tell the difference! We know when people care or empathize or not. Even when it comes to doctors and medical professionals! We can know exactly where their intentions lay and if it is worth our time and energy indulging them.

After nearly a decade of being diagnosed there are still some people who are friends or relatives that have either never bothered doing some investigation into my diseases on their own, and those who have. Those who haven’t even bothered looking up anything or trying to educate themselves in what is happening to me and my health I don’t disclose information to. Not at all. It clearly isn’t important enough to them so I am very careful about what I wish to share. For those who have expressed disrespect or suspicion I have even less time for them. It simply isn’t worth my precious time or emotions. To them I simply omit any and all details. I also pay them the same respect by not inquiring into their life or challenges as I believe relationships are two way streets. This seems like the appropriate balance and resolution to me. I simply wish them well and continue striving for the best life possible.

Since becoming an advocate I have opened up a great deal and put very private and personal information online to be shared with fellow fighters and anyone who has a genuine interest and respect for these painful, debilitating and global health issues. The fact that most people will know more about a celebrity’s dating habits or some rare and obscure diseases than autoimmune diseases, which affects more people than cancer, stroke and heart disease combined, is a complete anathema to me. My hope as an advocate has always been to educate and, hopefully, help improve research and treatments. That is my prime motivation of why I do what I do. It would be my dream if science were able to find cures in my lifetime, however in the meantime autoimmune fighters need the support and respect of the general public and those especially those who are closer to us.

It’s the least we should expect.

Gentle hugs,

Trish

Panic Stations

One of the things that I have had to manage, in the time since I became this ill, is the fact that I now suffer from the worst anxiety episodes I have ever encountered in my lifetime! I feel as though my sensitivity has been dialed up to its highest settings. It’s truly awful!

Although I know there are multiple reasons for this, it still is not easy to cope with. I am well aware of the role that my steroid medications have played in altering my emotions, my weight, my sleep and appetite, however It’s effects on my emotions and anxiety is truly staggering.

Amongst those of us who must take steroids like prednisone and methyl prednisone we call them the devils pills because of the price we pay for the relief it can bring. Ultimately it also damages our bodies in many different ways but we take it because we are desperate for relief from pain and various other debilitating symptoms. We don’t take them because we like it. I have had to take them every day for 8 years now and I will never come off them.

My anxieties are kept under some sort of control by trying to live as peacefully as I can. In fact I deliberately plan my life this way, but almost all of you know life never goes as we plan!

Recently a number of stressful events, and some medical issues thrown in for good measure, happened on the very same day! For me that equates to a category 4 cyclone or hurricane of anxiety! The after effects can feel the same too.

Anxiety, worry, fear and panic were never so overwhelming for me and I spent many years in high stress working environments. I look back on this now and wonder how on earth I managed! The answer is that I was a different person in so many ways.

Since illness and medication have entered my life I am not the person I was and certainly don’t possess the same emotions. My anxiety can be compounded by a number of factors, for example, many of us must contend with the combination of medication, pain, lack of mobility and independence that these diseases bring, however, when something major happens in my world I am painfully aware that I can’t drive, lift, carry or nurse the way I once was able to. In fact I feel incredibly helpless and vulnerable.

It’s so incredibly difficult!

Many people still expect the old Trish when things happen. The stoic soldier and the problem solver. The shoulder to lean on and the wall of strength. I want her too! But she is not there now. Not the way she was.

Today all my strength is used to face the challenges of living with these struggles. All my problem solving must go on how to create a happy and secure life for me and my little family here. All my willpower is used to keep going. Any left over strength, no matter how small, I must be cautious where I spend it.

That means I don’t waste emotions on things and people that aren’t truly worthy or healthy relationships. For example, the ones that take from you and drain you are not worth me feeling upset and anxious over. The ones that would attack and be self focused are particularly dangerous for sufferers like me. They cause pain and suffering that they really don’t care about and leave you with the emotional bill. An anxiety I don’t need and can eliminate as much as possible.

Anxiety is a beast I try hard not to feed as it can eat me up; emotionally and physically. It’s another part of Autoimmune life that I wish were not so and can contribute to a physical flare and real prolonged suffering.

However there are special people and relationships that are worth it. Those rare relationships that are so much part of our lives that suffering and panic is something I will go through without hesitation and I would crawl to a hospital to care for them. It’s often when an event happens which is so stressful and important that I am reminded who those relationships are for me.

As difficult and painful as anxiety issues are these days I have found other strengths to compensate. The strength to be more open about myself. The strength to be more honest about myself. The strength to drown out the unwanted noise in my life. The strength to see more clearly who is worth my emotional suffering. The strength to see myself as I truly am and accept that person, wholeheartedly and genuinely. The strength to have dignity and pride in myself; despite all that has happened.

Although I know I must shoulder some painful and difficult burdens, I am confident that I am doing my level best. I marvel at these same abilities when I see my fellow Autoimmunes doing their best too!

Gentle hugs,

Trish

Chronic Selfies

Sometimes I post a picture of myself, in our car, whilst we are at the beach or out for a short drive. My friends might think it is odd that I am always taking pics of myself like this but they will never know what it takes to even do such a thing. They can never know what is going on behind the scene.

What can’t be seen in the picture is that for months I have not been outside my home and I have been feeling frustrated and longing to see something different and to see life… to feel alive!

What they can’t possibly guess is that it took hours to get ready. Yes hours. I will need time and assistance to shower, dress, do my hair (even in a ponytail), do my make make up (even just some tinted sunscreen, lipstick and a little blush), to get me into the car (that’s another chore in itself), then sit me up with heat packs on my back and hips (even in summer) and cushions here and there… and then we can go!

They can’t know that I feel every bump in the road, every time we brake, every turn and even just sitting hurts. I try to take some meds before we start off.

They can’t know that I hardly ever get out of the car because of what is needed to put me back in, especially if it’s for a small errand like the pharmacy or a script.

They can’t know that although it’s like a torture to see people walking, playing, swimming and doing all the things I wish I could do, I still love seeing them and I feel no ill will. Perhaps a little envy at times.

They won’t know that I take the pic to show them that I am still alive and trying to do things and that I haven’t given up.

They won’t know that the pic is kept on my phone to remind me of the day I went out, especially on hard days when I am feeling low and hurting.

People won’t know that aside from when my friends write “hello Trish! You look well. Hope you have fun” that I never hear these words anymore because I rarely get to see people.

People won’t know that I will never know what days that I can do any of this as each day is unknown to me. My health is a day by day scenario. I can’t plan when I can do anything anymore and I have had to break so many plans and appointments because of my changing health that I can no longer make plans with people in advance.

People won’t know that for a day, or days, afterwards I will feel exhausted and extra pain. That is just the price I pay every time. I can not avoid it, that is why it is such a significant event for me, even though it may seem very common place to everyone else.

We can never know what goes into each picture we see on the internet. The time, the emotions, the planning and activities in pictures that are taken by people all around the world.. but if you have health battles and constant chronic struggles you will have some idea of what you are looking at when you see someone with autoimmune or chronic illnesses take a selfie and my fellow fighters around the world do have an idea what it has taken for me to have a ‘selfie’ and I feel so connected to them and thankful for their understanding. I hope that by sharing these little pieces that I write it will help others understand too.

… At least I hope so.

Gentle hugs,

Trish

No Pity

It always saddens me the number of people who assume that the chronically ill are always feeling sorry for themselves. They assume that we are constantly feeling self pity and self involved.

I don’t agree.

Speaking only for myself I can honestly say that I don’t carry around a load of self pity and it is only occasional moments where I feel like I have had a rough hand dealt to me… which is probably less than most other people feel who are perfectly healthy and able bodied!

There is always this assumption that if we even speak about my autoimmune diseases it will open the floodgates and I will burden people with details of my struggles. The truth is I don’t. The thought of having to illicit help or empathy from people deeply disturbs me. I have never asked someone to care or help me with my health struggles. I believe that people either care or they don’t. The choice is theirs.

I feel certain that most Autoimmunes want to live with dignity and respect, not pity or being looked down upon, so I don’t understand why many people seem to deem us as attention seeking or trying to elicit sympathy.

The other day on Facebook I saw pictures of people posting about their cars, their motorbikes, their holidays, their new clothes and their new looks and they were seen as healthy and normal behaviors. People encouraged and engaged with them. Furthermore, people offered compliments and best wishes to those who had posted and spoke of each persons achievements in a kind and loving way. Coincidentally on that same day another friend posted a picture of themselves in hospital, due to their ongoing battles, and few people expressed any comments or mentioned how courageous they were. There was no admiration and no recognition about what an achievement it was that [they] were coping with such ongoing challenges and struggles…

It made me incredibly saddened!

The contrast was deeply disappointing and brings to light the differences in how people with chronic health issues are seen and treated.

People with chronic illnesses are rarely made to feel proud of their achievements and their ability to keep going with their struggles compared to someone who might have lost weight, gone on a luxury holiday or got a promotion.

But why?

The amount of effort, dedication, courage, resilience, bravery and determination needed to keep going in the face of some of the most difficult and painful obstacles is breathtaking. Yet if we dare mention or allude to these circumstances we are deemed as simply seeking attention or having a pity party.

I, personally, don’t think that is fair, I don’t think it’s necessary and I certainly don’t think it’s warranted. Can you imagine how different and amazing it would be if, when we felt our most challenged, broken and struggling, we could be reminded of how remarkable we were for managing and coping with all that we do? If we were commended for our achievements and dedication. If we were celebrated and supported just as much as everyone is. Often it is only other sufferers that will show anything approaching respect or encouragement for those with chronic illness or Autoimmune diseases and I am truly astounded and saddened by this.

So….

to all my fellow fighters out there put those pictures up! Show the world how amazing you are and all you cope with! Show the world that our actions are not a just a simple case of self pity it is self pride!

Gentle hugs

Trish

A New Friend.

Over the past year I have witnessed the slow and lingering death of a friendship, and I have done so with some very mixed feelings. We tend to see things so much differently at the end and although I feel a sense of loss for the 20 years I feel that I have given a great deal of devotion, care, love, time, effort, assistance and money, I also feel like I have learned a lot too.

Back when I thought we were friends I called when [they] were sick. I visited when [they] were going through a difficult time and break up. I remained [their] friend when everyone told me to let go and that my friendship (and me) were being taken for granted. Repeatedly. Yet I continued on trying hard to be the friend that I hoped I would eventually get in return.

… I should have listened to those other voices. Hindsight is always so much better!

I know that there are so many people out there with similar stories and similar circumstances and they will relate to the sense of sadness and loss that I have been through, they may even be able to grasp the sense of profound foolishness I feel, yet it still doesn’t make it feel any easier or better. I am also sad to admit the there is a piece of me that feels like I knew this is how it would end and I should have known (and done) better.

Back then I made poor choices. Back then I was too quick to give love and loyalty away. Back then I probably felt, on a very real level, that I didn’t deserve better. It’s strange that it took getting to this level of illness to see that I do! … and I deserve so much better!!

People rarely understand some of the profound and incredibly important things we learn and see as a physically impaired person and a chronically ill person. They don’t tend to see how much wisdom and personal growth we can experience because they only see the external and the shallow.

However, with reference to the above relationship, this former friend always seemed to have an excuse for why they didn’t put in the effort and why they took advantage time and time again. Perhaps they truly believed all those poor excuses as it served their own purpose. Who knows? Slowly it also occurred to me that not only do I deserve better than that but I am now the caretaker for my emotions and efforts while my body is at its weakest and most vulnerable.

Let me explain a little more please …

Twenty years ago when my relationship and friendship started with this person I was much less careful and conscious of the work, effort, time, energy and treatment of my heart and emotions. I would give too much and to the wrong people and situations. I would then find myself asking why has this happened and what about me? It now seems like such a self harming mentality. It was very humbling when I came to see it all through new eyes… I also had to own my part in it all.

Since becoming this ill I have seen many things through new eyes and every part of life has been put under the microscope. Friendships are a very difficult topic for the chronically ill and illnesses can also act like an antibiotic will in killing off the weak or harmful presences in our lives. Illness will destroy all relationships that are weak or not real. Therefore It can wipe out a lot of relationships. Sadly, this can also mean that after a short period you are left with very, very few real and strong bonds.

As I write this I am surprised how retelling and writing this feels much more like a revelation and not simply a tale of woe.

The challenge now is finding stronger, equal and healthier relationships whilst in these new circumstances, and amidst these new challenges. That is my new concern and where my mind has been focused of late. It’s been incredibly challenging.

I do get to meet people with similar illnesses and similar physical challenges inside support rooms and chat rooms but that never means that they are always the right fit for us simply because they share this physical aspect of life. We are still complex characters inside with different perspectives, experiences, likes, sense Of humors, hopes, goals, interests etc…

A meaningful friendship and relationship is based on a meeting of the minds just as much as sharing some physical interests and attributes. Also, all those wonderful physical cues that our bodies can provide in a one on one situation are not available through a computer. Things like a smile, a hug, empathy, a knowing look… these are all important to developing relationships and trust.

So here Is the challenge… Trying to find and forge new connections in these current circumstances.

It’s incredibly difficult.

The rules and rituals for making new friends are so much harder in these circumstances. It’s difficult to schedule meetings and activities together. It is hard to commit to outings and timelines. It’s hard to be seen as reliable when my body is not in control. Unreliability is often confused with lack of interest and being untrustworthy.

I also don’t want to make friendships which are entirely based on health struggles… I don’t want it to be all about illnesses. I would like to make a deeper bond with someone who can see the inner me and someone that connects with that person. I am sure every chronic feels the same!

There are no easy answers for finding, forging and maintaining new friendships with the chronic bodies we now have, and this is far more the most painful part of all for me… Far more painful than losing the friendships I thought I had.

Gentle hugs,

Trish