Tuesday, 4 October 2016

Being You, Despite Chronic Illness

I didn't brush my hair today. And I didn't bother getting dressed. I did brush my teeth though; that was a major achievement. I look like crap, it hurts to move, and I have one hell of a headache. I always seem to have a headache lately. Oh, and I did mention that I'm too sick to work or study? My life as a patient revolves around medical appointments, hospitals, doctors, blood tests, medicines, pharmacies, invasive diagnostic tests and waiting rooms.

Ten years ago, I was diagnosed with lupus and myositis. Back then, it didn't affect me much. My main symptoms were migraines, joint pains and fatigue. The impact on my life was minimal. I worked full-time, partied hard every weekend and most weeknights. Ten years later, I am housebound with physical and mental pain 24-7, and when I do leave the house, it's only to see doctor or a specialist. Sometimes I might say hello to the postman.

And life is so much fun when you're getting a colonoscope stuck up your bum...

Since I became ill, my life has changed in so many ways that I have often struggled with my sense of self. This is further complicated by my recent diagnosis of borderline personality disorder, which causes disturbances with self-identity. Illness and certain medications can alter your physical appearance. I have dents in my backside from repeated steroid injections, lesions, scars, bruises, stretch marks from repeated weight fluctuation, and at times, hair loss. I own more pajamas than clothes and at Christmas, I actually want socks. Lots of socks. I get more excited about new bed linen than a healthy person would with a pair of new shoes. Such is my life as a sick person. 

"Chronically ill persons frequently experience a crumbling away of their former self-images...Such losses are most marked at the onset of a serious, debilitating illness or at points when ill persons define former actions, lives and selves as now precluded by illness." ~ Kathy Charmaz

So how do we maintain our sense of self through chronic illness? A report by Chronic Pain Australia (CPA) says that having goals and plans is beneficial. I have personally found that having goals (even very small goals), writing and making plans (I LOVE writing lists...but I just need to figure out how to get the things done!) helps me work through things one step at a time. They add that it is "important to let go of past images of ourselves which no longer fit with our situation. While we hang on to them, it places pressure on us to meet expectations and to be someone that we no longer are." Letting go is a constant healing process of building confidence and self-esteem, self-analysis and introspection. That is something I struggle with the most. 

CPA also recommends working on personal development, e.g. "becoming involved in activities such as part-time study, interests or hobbies has assisted us to develop different aspects of who we are."

Most importantly, CPA says that "Perhaps one of the strongest points to make is the positive influence of a supportive network of people...Access to groups of people experiencing similar situations provides encouragement and understanding for the journey toward realising an altered self. This might happen online or face to face." Exchanging information, tips and advice empowers you to take control of your illnesses. Without the internet, I have no idea how I would cope - I am housebound, so being able to connect with others who understand, online, helps me fight the fear, loneliness and isolation caused by my situation. Thanks to support and friendship from people all around the world, I no longer feel so misunderstood who understand. These amazing people, who are my friends, have literally saved my life, and I will always be grateful for them!

Support and understanding from those who understand will help rebuild your confidence and self-esteem. It is a constant healing process. I have learned that it is not the destination that really matters, it is the journey. Don't think of the results, just keep going. Take each day as it comes, one step at a time, at your own pace. Remember that everyone is different and that everyone has different ways of coping. It is not a competition. It is you, and it is you who counts. Try not to beat yourself up if you have bad days, when you don't feel so strong. These days are natural and are part of the ongoing process.

Having a chronic illness is a full-time job and it can be difficult to keep things simple, when you're having to manage an endless stream of appointments, diagnostic tests, medication, commitments and responsibilities, financial burdens, the need to rest and so on - which does not leave much time for you; when you can take a breather and simply be you.

Finally, remember that you're doing the best you can and that is enough. Be kind to yourself.


* Sociology of Health & Illness, Volume 5, Issue 2 
Article first published online: 28 JUN 2008

Thursday, 18 August 2016

What I Want You to Know About My Chronic Illness

When you are chronically ill, you are forced to fight battles you did not choose. The battles never end; you are fighting illness 24-7 and it is tiring, messy work. It can affect all areas of your life, wreaking havoc with your relationships, employment, education, finances, social life and so can tip your entire world upside down. And it doesn't just affect you; it also affects the lives of everyone around you.

If you are lucky to not have a chronic illness, I cannot expect you to understand what I am going through. I could ask you to step into my shoes, but you cannot truly understand what I am going through unless you are me. All I can do is try to help you understand what I am dealing with. Here are some things that I want you to understand about my chronic illness:

I may look well, but I'm not

Do not be fooled by my appearance. I may look well, but beneath the surface is a world of pain and fatigue. If I say that I am tired, then I really am tired. I am not malingering, or lazy, or imagining my pain. If only I could show you what goes on beneath the surface, you would be horrified by what you would see. I may often be in constant pain, in the sort of pain that meds cannot numb. If you become chronically ill, you may lose your mobility, or become disabled. Sometimes, there is visible evidence, such as mobility aids, prosthetic limbs, scars, or disfigurement; these are the battle wounds that can be seen, that people believe. But when the battle goes on beneath the skin or within the mind, the battle wounds cannot be seen. No-one can see that my body is on a self-destruct mission, or that my mind hurts. They cannot see my wounds and people will not believe in battle wounds they cannot see. Did you know that 96% of chronic illnesses are invisible?

Just because I have a good day... doesn't mean that I'm better, it just means that I'm having a good day. Tomorrow may be different. My illness is unpredictable and I have no control over it. Often, I am unable to attend family and social events

I hate the loss of my independence

Having a chronic illness can leave you housebound and dependent on other people. Being ill has taken away much of my independence and at times I feel like a prisoner in my own home. You may lose your income and are not able to support yourself; you may be unable to look after yourself and it may become a struggle to maintain your dignity. It is difficult to explain these things to other people, to medics, to your loved ones and to those who take care of you. I feel like a burden, an inconvenience that must be dutifully dealt with; a chore. I take, take and take, just to stay alive, but I'm unable to give much back in return.

I feel guilty all the time...

...because I feel like a burden. I require a lot of hep and attention, which may interfere with your own life, with your work/studies, friendships, your social life and so on. You may spend half your life taking me to medical appointments and running around after me because I can barely look after myself. I am sorry that living with my illness causes you so much stress and interferes with your life. Sometimes, I feel like I'm being blamed for my illness. Psychology Today writes that "adults who tended to blame themselves for their chronic illnesses did more poorly because self-blame is not only demoralizing but it also creates significant internal stress which...[causes] further declines in health which then lead to more self-blame." 

Life with chronic illness is lonely

You may struggle with isolation and loneliness, even when you are surrounded by people. You cannot relate to them, they cannot relate to you. And even when you are being cared for and have people around you, you often feel alone and you feel that no-one understands your pain. Humans are social animals, we rely on each other to stay alive. My chronic illnesses has cost me many friends and loved ones. I have no social life because I am mainly housebound, and sick friends aren't much fun. It is during your worst times that you learn who your real friends and loved ones are.

Being chronically ill affects my state of mind

As you can tell, dealing with a chronic illness has affected my state of mind. Just like 'invisible' physical illnesses, mental pain is unseen. People usually tell me to pull yourself together...just snap out of it..get over're just being're just want attention...People do not see that I am trapped by my own mind. They do not live with the constant terror of anxiety, or the numbness of depression. Mental pain causes further invisible scars. Being alone, isolated, stressed, anxious and depressed from dealing with your chronic illness can wear you down. It is important to look after your mental health just as much as you look after your physical health.

I am still me

I know that at times my illnesses may seem to consume and define me, but it doesn't mean that it has killed the person I am inside. I am still there. Even if you can't see me during these times, I am still me and always will be. Beneath the layers of physical and mental stress, I am still there. Please do not forget me. If I slip beneath the waves, please still keep looking for me, even if it seems that there is no hope. Please do not give up on me. You may not be able to see me, but I am there and I have not gone away, despite the changes and years that have passed since I first became ill, and despite how my illnesses affect me now. 

I know that you suffer too

You think that I do not see it, but I do. You think that I cannot hear you, but I am. I am acutely aware of your suffering and it is unbearable, knowing that you are suffering from my illnesses too. I see how it tires you out and takes up most of your time; I see how it stresses you out and threatens to overwhelm you. I know that you are suffering too. I feel powerless watching you suffer and not being able to do anything about it.

I am chronically misunderstood, and you may feel like this too.

Monday, 25 January 2016

The Doctor - Patient Relationship: It's Complicated

A while ago, I struggled with doctors who knew little about my illnesses and couldn't cope with the complexities of it. I went through years of having terrible doctor-patient relationships, which had a direct negative impact on my health. This is where I learned about the importance of the doctor-patient relationship and how it can directly affect your health.

A few years ago, my specialist wanted to investigate the cause of the mysterious stomach pain I'd been suffering with for ages. He asked my GP to organise an ultrasound locally, to save me the 120 mile journey to the lupus unit in London. I had to fight with the GP to get this, because she didn't feel that it was necessary. Nor did she want to do the regular BP and pulse checks (due to my consistently low blood pressure and fast pulse rate) that my specialist had requested. I had another fight with the GP to get the regular urine tests, as requested by my specialist (to check for proteinuria).

I eventually got the ultrasound and a very large cyst was discovered on an ovary. The cyst would go away on it's own, the GP said; and then ordered a blood test to check for ovarian cancer, which scared the crap out of me. She did not explain why she was doing this, and she dismissed my concerns; her attitude seemed to say "I'm the doctor, you're the patient, be quiet and do as I say."

There was a ping-pong between the specialist and GP for a while, about who was responsible for which aspect of my care. As another example, I asked the GP for a referral to a gastroenterologist, which my specialist requested. But the GP refused, because she thought that it was a lupus problem and therefore, not her problem. I kept going round in circles like this for years; with both specialist and GP struggling to agree who was responsible for my health problems. It was exhausting.

In another example of a bad doctor-patient relationship, my specialist also had problems with another former GP of mine. He asked the GP to prescribe me mycophenolate (CellCept), so that I would not have to travel to London every three months for refills. But the GP refused because his BNF book said that it is only licensed for transplant patients (an anti-rejection drug that suppresses the immune system), and not for lupus. But it is actually common practice to prescribe off-label drugs in this country and despite the NHS saying they would fund my drug, the GP still refused, saying, "the doctors here, myself included, do not want this responsibility." He was equally stubborn about prescribing cholecalciferol for my severe vitamin D deficiency, saying "Everyone has a vitamin D deficiency in this country."


GPs often struggle to deal with lupus and other autoimmune disorders, due to the complex range of symptoms they produce, and because lupus can attack any part of the body. There are often conflicts between GPs and specialists about who is responsible for which problem. 

It became clear to me that establishing a good doctor-patient relationship is essential for our health. Trust is an essential part of a good doctor-patient relationship. I find it difficult to trust doctors because of my previous experiences. Without trust, effective communication between the doctor and patient cannot exist. Miscommunication can have a drastic impact on your health. 

The Lupus Alliance says, "A basic plan can help you communicate better with your doctor whether you are continuing with the doctor you`ve been visiting, or starting with a new doctor." 

They suggest the following:
  • Be prepared. Take a list of questions with you. This will help you be sure to remember what you wanted to ask between visits, without wasting the doctor’s time and yours while you try to remember all of your concerns. Doctor`s appreciate when you do come in with questions written down, it not only helps them treat you, but it shows them that you want to take an active roll in your treatment.
  • Consider bringing a family member or friend with you to help be your advocate. This is especially helpful if you are nervous around doctors, in too much pain to articulate your concerns, or if you have memory or cognitive problems.
  • Keep a diary of symptoms, problems, side effects and more, that you can show your doctor at each visit. Visits with a Rheumatologist who is treating you for lupus are usually at least one month apart and a lot can happen to you in one month; making it difficult for you to remember them all once you are at your visit. Writing it down helps your doctor know what may or may not be working, and if and what new tests may be needed.
  • Be honest when your doctor asks questions. Remember nothing you tell your doctor is insignificant when it comes to a disease like lupus, even if you think it probably isn’t important, or necessary to tell the doctor, tell them anyway and let them decide.
  • Be sure to stick to the facts. What symptoms you had, when you had them, were they right after taking medications, were they after strenuous activity etc. These details can help a doctor decide if it is something they need to look into and how.
  • Take notes at your visits so you don`t forget instructions, or possible side effects to look out for etc.

As the Lupus Alliance says, "an informed patient is an empowered patient...An important part of good health care is a good working relationship between you and your doctor. You must be able to communicate well with each other so your needs are met."

For the rest of this article and more excellent tips, please check out the rest of it:

Saturday, 23 January 2016

Chronic Illness: The New Normal

This post is a follow-on from a post I wrote last year: Lupus and My Self. I wrote about the effects of chronic illness on my state of mind and how it affects my sense of self.

I was diagnosed with lupus and myositis in my early 20s. I was young, working and earning money and having fun. I found the diagnoses difficult to accept and in the early days, I tried to pretend that I was 'normal'. My 'old' normal was being replaced with a 'new' normal, and it scared the hell out of me. It was something I did not understand and I could not control it. I couldn't predict what my body would do to me next. My body was changing; the creeping fatigue grew worse and by the time I was 25, it was a monster that had taken over my life. I struggled with the side effects of the various medications I was taking - immunosuppression, steroids, and others; and dealing with more frequent flares and chronic pain. The illness and medications also changed my physical appearance, which punched holes in my sense of self. I hated my body for what it was putting me through.

With chronic illness, you also have to adapt to being a patient and navigating your health system. Being a patient requires you to undertake activities that healthy people do not usually have to worry about, such as seeing doctors, going to the hospital and taking medicines and so on. Even now, it still often feels abnormal to me. When you first become a patient, you enter a world that is a place completely alien to you. The hospital environment is huge and frightening, full of sounds, smells and sights that you are not used to, where strangers do things to your body in order to help you, and then you have to trying to navigate through the complex health care system in order to get the treatment you need. It completely throws you off your feet.

This becomes the 'new normal'.

Chronic illness affects almost every area of your life. The 'new normal' - being chronically ill - can have an adverse impact on our lives, our sense of self and on everyone around us. Many sick people are unable to work and will struggle to pay the bills. Many of us need to rely on state welfare, which brings with it added challenges and stress. Being chronically ill can also cause social isolation, relationship troubles, a loss of independence and so on. Here, I again refer to Kathy Charmaz, who suggests that, as a result of being chronically ill, "these individuals suffer from (1) leading restricted lives, (2) experiencing social isolation, (3) being discredited and (4) burdening others."*

We don't like being seen as helpless, fragile and vulnerable. We like to be seen as strong, fierce and independent. And yes, we are strong, but we get days where we don't feel so strong and want to cry, scream, rage and grieve about it. This does not make you weak. In fact, it takes immense strength to acknowledge that we cannot be strong all the time. If we did not experience days where we did not feel strong, we would not know what it meant to be strong. Without weakness, we could not be strong, because we would not know how to fight for anything.

How we react to and deal with chronic illness varies depending on the situation.** Everyone is different and copes differently.

"Eventually, you adjust to a new normal," explains Lisa Copen, founder of Rest Ministries, Inc™*, an organization that serves the chronically ill. According to Copen, once you find the right doctor, medication and support, you can learn to cope successfully with your limitations—as long as you remember that you're not just dealing with your physical well-being; instead, you're learning to cast your relationships, emotional and spiritual health and physical health in a different light.***

So, what do you do with this new normal? You begin to realise that you cannot run away from it, or hide it. There is only one thing you can do, and that is to face the monster, look the b*****d in the eye and kick his arse. While you may not have much control over your illness, you can regain some control; not by trying to win back what you have lost, but by redefining your new normal and ultimately, refining your resilience. It can take a while to adapt to the new normal. "Rebuilding or redefining normal is a long process," explains Georgia Shaffer, a psychologist." So how do you do that?

I have found that educating myself about my illnesses has empowered me to make better, more informed decisions about my health. Learning about your illness and understanding the jargon enables you to open up a working dialogue between yourself and the healthcare professionals. When I was younger, my mother said three words that have been etched onto my mind since then: "Knowledge is power."

Another major thing that has helped me adapt to the new normal is joining support groups. Whether in person or online, support and friendship from others who understand what you are going through makes a huge difference. Support groups enable you to share information, advice, learn, help each other and increase your confidence. The friends I have made through support groups are like family to me now.

While your illness may place limits on some aspects of your life, it does not mean that your life is over. While there may be restrictions, you will learn that there are other things that you can do. You will learn about your limits, though these may change over time. It is important to take each day as it comes (my favourite cliche) and expect the unexpected. It is okay to say NO when you need to. True friends will understand. You certainly learn who your true friends are when you become chronically ill. It is also okay to ask for help when you need it. Asking for help does not mean you're weak; in fact, it takes a strong person to accept that they need help and ask for it.

Adapting to the new normal is something that I am still learning, years after my diagnosis, but as I've grown older, I've come to realise that it is an ongoing, lifelong process. Life is exactly that, an ongoing process, in which you learn more and more as you go through each day and battle. You become wiser, stronger and resilient. You are a phoenix and you will rise out of the ashes each time you fall apart, stronger and more beautiful than ever. Never give up. Do not surrender. 


* Sociology of Health & Illness,  
Volume 5, Issue 2, Article first published online: 28 JUN 2008



Friday, 22 January 2016

My Lupus Story

I have finally gotten round to writing in the "About Me" section of this blog. Here, I will share what I wrote on that section:

My name is Atlanta and I live in England. This is my lupus story:

Nine years ago, when I was 22, I was diagnosed with lupus and myositis. I did not know much about these strange disorders; I had heard of lupus before, because I had read about Kelle Bryan's battle with lupus, but I had never heard of myositis before. I did not know anyone else going through the same thing and I felt very alone. I felt very odd and strange, as if I was the only person in the world going through this. 

I was given a brief description of what I might expect in the future: joint pains and swelling, possible organ damage, overlap illnesses, migraines, extreme fatigue and muscle pain. These were the symptoms I was already suffering with (mildly at that time). But it slowly started to intrude into my life, work and studies and I found myself struggling to keep up with the rest of the world. I worked hard so I could have enough money to go out nearly every night and party all weekend. I would self-medicate by drinking alcohol, which only made things worse because it aggravated my mental health problems. Slowly, over the years, my condition progressed. Other symptoms emerged; worsening of my depression and anxiety, migraines that did not respond to meds, skin rashes, weight loss, dizzy spells, fainting, medication side effects from steroids such as manic moods, water retention, acne, infections, insomnia, 'foggy  and insomnia; I remember the night I spent in the bathroom cleaning it at 4am in the morning.

Lupus is notoriously difficult to diagnose and it often takes several years to finally get diagnosed. I had experienced symptoms since childhood, but these were always dismisessed as growing pains. This is despite the pain being so bad in my knees that I would be screaming and crying in pain all night long. I cannot even begin to imagine how horrible it was for my mum watching her child suffer in this way and not being able to do anything about it. Sometimes, the doctor would be called out to see me, or I would be referred to various specialists from childhood, right through my teens and early adulthood. No-one thought of testing me for lupus, and instead blamed my symptoms on depression, psychosomatic illness, pregnancy (I have never been pregnant in my life and when the doctor suggested this, I was in the middle of my monthly!), hypochondria, growing pains, or being an attention-seeking lazy teenager who was simply trying to get out of going to school or work. 

After years of testing that revealed nothing, the doctors gave up. I began to doubt myself. Was this pain real? Were the three-day migraines that had me wanting to bash my head out on the wall fake? Was the red butterfly rash on my cheeks real? Our bodies are designed to tell us when something is wrong by sending us pain signals. My body was in pain and my body was trying to tell me something; it was in distress. It is a frightening thing doubting your body and mind because you stop trusting yourself and your body. I did not even know who I was at times; the person staring back at me in the mirror was a stranger. 

When I did finally get the diagnosis, I did not handle it well, but there is no 'right' or 'wrong' way of dealing with a diagnosis. You respond to it in your own way. Everyone is different. It took years to get my diagnoses and although I felt vindicated by the diagnoses, I felt like a label had been stuck on me and I was a lupus - a label that nearly took over my entire identity. I was no longer 'normal', and I put a lot of effort into faking normality; I pretended that I did not have to take 35+ pills everyday; I pretended that I did not have to see specialists for rare conditions most people have never heard of. But no matter what I did, no matter how hard I tried to ignore my symptoms, my symptoms continued to grow worse. The pretending was exhausting and I was burning myself out with the effort. As I got older, I realised that I could not run away from the awful reality of my illnesses. My life was changing. My body was changing - the creeping fatigue, the increasing frequency of flares, the side effects of medications, being in chronic pain and the growing list of additional overlap illnesses. I felt alienated from my body. The illness and medications changed my physical appearance and aggravated my mental health problems. My body image and sense of self were being swallowed up by the sickness. I hated my body for what it was doing to me and for a while, I indulged in various destructive behaviours.

Because lupus is an invisible illness i.e. you look well despite the lupus munching away at your body beneath the surface. People tend to associate sick people with wheelchairs and other visible signs of illness. In lupus, where the only visible sign might be a butterfly rash on your cheeks (not every lupus patient gets this rash), people might disbelieve that you're sick. I used to question myself, "Am I really as sick as I feel?" Sometimes, even I doubted that I was sick at all, despite my symptoms and the horrific physical pain.It took me a very long time to realise that my suffering was not in my head and so, I felt vindicated when I eventually received my diagnosis. I was not exaggerating or pretending; what I was going through was real. My illness is invisible, but still present.

At the time of writing this, I am 31 years old. Over the years, I have experienced much and have learned so much about my illness and myself, and more importantly (because this has saved my life), I started connecting with other people who were going through the same thing online. I no longer feel like the only person in the world going through this. I have met so many inspirational people who blow me away with their strength and I have also made many new friends, who I consider as friends for life and beyond. It has taken me a long time to bring my suffering out into the open. I have learned that hiding my illness made things worse. Why was I so ashamed of my illness? I soon learned not to be. Becoming ill is not your fault. Life throws many challenges and surprises at us and it is often difficult to keep up with. All you can do, as the cliche goes, is take things one day at a time. We cannot predict the future and we cannot predict what our illnesses may do to us. I am trying to learn to live in the moment
I write my blog and run my Facebook page because I want to people to know that they do not have to go through this alone. No-one should go through this alone. 

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