Chronic Illness & Fear of Judgement

I’ve always been a socially anxious person. At the root of social anxiety is a fear of being humiliated, scrutinised or judged. When I was younger, I think I was quite a judgemental person. I was quick to criticise and see the worst in people; other people, as well as myself. As I’m getting older, I am learning how unacceptable and unnecessary it is to judge anybody for anything. We are all just trying to do our best on our individual journeys. Yoga has helped me immensely with this. It teaches me and reminds me, every day, to accept where I am in my own journey, both on and off my yoga mat. And I think that by learning not to judge yourself, you inevitably learn not to judge anyone else.

That said, I am definitely not perfect in this regard and I still sometimes catch myself making an unfair judgement about another person or, more often, about myself. I also still have an incredible fear of being judged by others, and this creeps into almost every element of living a life with chronic illness.

As an example, I have quite a serious phobia of doctors. This stems, I know, from countless appointments with GPs where I have not been treated with the respect or dignity that all patients deserve. Like the time I was told that there was “no way” I could be experiencing the symptoms I described because they were “medically impossible”. The time I was told that I couldn’t be that ill, because I had a boyfriend (apparently really sick people can’t meet members of the opposite sex). Or the time, and this is no word of a lie, I was told to “go to Africa and see starving children if you really want to know what sick is”. These comments are rude, insensitive, unkind and extremely damaging. They are judgemental. Anyone who knows me will know that, like many people with chronic illness, I really don’t exaggerate my symptoms. In fact, I am so afraid of people thinking that I am exaggerating my symptoms, that I massively under-report them. So when I go to the doctor to discuss my illness, I am not being a hypochondriac or a drama queen, I am simply seeking help for symptoms that are having a significant impact on my quality of life.

Despite this, I have been made to feel so stupid, over-the-top and unworthy of a doctor’s time, that I have a serious and significant fear of going to the doctor. As someone with chronic illness, this is a problem. It means that I am not properly monitored. It means that there is no one person who oversees my medical care or knows what treatment I’m having. It means I avoid telling my doctor how I’m really doing. It means that, 8 months after being diagnosed with Lyme disease, and 4 months into treatment, I still haven’t had a single conversation with my GP about it. If something serious happened to me, my medical notes are so out of date that no-one would know how best to treat me. My Lyme disease specialist requires me to have regular blood tests throughout treatment to monitor my liver & kidneys, and I am so afraid of speaking to my GP about it that the thought of even making the appointment is keeping me up at night.

The fear of judgement doesn’t stop at the doctor’s office. I am very private about my health issues and there are very few people who know a lot about it. I am trying to get better at this, because keeping it a secret is very isolating and makes me feel lonely and disconnected a lot of the time. I think it is essential for humans to have connection. Even as a socially anxious person, it is important to have meaningful relationships and to not feel like you have to hide what your life is like. But yet, the thought of sharing the details of my illness and treatment with other people fills me with fear because I have no idea what people will think or say. Sometimes I get snippets of opinions or advice that give a little hint that someone is making a judgement. The sad thing is that I know these people most likely have no intention of judging me and probably don’t even realise they are doing it. They are good people; people I like and respect, but still, the subtle signs of judgement are there.

Like, for example, the person who tells me that they think people with chronic illness should learn to live with their symptoms and not let the search for a diagnosis take over their lives. Or the person who told me how they had learned to live with their own condition (a condition very different, by its nature, to mine), and that I should do the same. Or the person who told me they thought the treatment I was having was very risky and that I should find a different doctor. These may all be valid arguments, and they may be well-meaning. But they have one thing in common: they all contain a “should”.

The word “should” suggests that you are making a judgement. It suggests that you think the person at the receiving end of the “should” needs to be doing things differently, or making different choices. That, if you were in their shoes, you would be doing a better job. I frequently catch myself using the word “should” in my head, and I like to challenge it because it typically means I am judging myself (you should be better than this, you should have done xyz by now, you shouldn’t be getting so upset…). Not only is judging someone unneccessary and potentially harmful, but it is also unfair. How can we possibly say what someone else should or shouldn’t be doing, when we have not lived a single second in their shoes? How can we decide what choices someone should or shouldn’t be making, when we have no idea what life is really like for them, or the struggles they experience each day?

I know that my fear of judgement is something I still need to work on. I know that it stems from social anxiety and a few bad experiences, and I know that there is value in learning how to let go of what other people think. But I also think that we all have a responsibility to catch ourselves when we are being judgemental. To question whether we are really in a position to make that judgement, and to consider what it might be like to walk in someone else’s shoes.

Should we accept chronic illness?

I’ve always tried to approach chronic illness with positivity. I’ve never really seen the point of moaning, it’s not like it changes anything. At best you wind up feeling irritated and stressed, and at worst you make everyone else around you feel miserable too. Recently I’ve been thinking a lot about positivity and how it relates to acceptance, of chronic illness or of any other difficult situation.

The last few years I’ve increasingly moved towards an attitude of accepting my illness and the limits it places on me. I think my yoga practice has contributed towards this; we are always encouraged in yoga to show self-compassion, to recognise the limits of our body, never comparing ourselves to the person on the mat next to us but instead being happy with where we are on our own journey. I’ve spoken to many people with chronic illness who say that an attitude of acceptance has been crucial to maintaining quality of life, and until recently I think I could say the same for myself.

I read a book a couple of years ago called “How to be sick: A buddhist-inspired guide for the chronically sick and their caregivers”, by Toni Bernhard. It was one of the most positive and uplifting takes on chronic illness I’d ever come across, and had a profound effect on how I looked at my own situation. It helped solidify my desire to live a positive life, free from mumbling and grumbling, focusing on what I could achieve instead of what I couldn’t, and accepting my life exactly as it was, without needing the circumstances to change.

In some respects, I still think that this attitude has many benefits. If our contentment is reliant on the external world, we will never be happy. There is always something to be unhappy about. Sure, some people have it worse than others, and throughout the course of all of our lives we will have times when we have more or less to moan about. But things will never be perfect. Everyone has something in their life that is difficult, and as soon as one problem passes, we find something else to worry about. Taking a positive approach and focusing on what we can achieve in spite of those problems, allows our mental state to be greater than the sum of our external problems.

Recently, however, I’ve started to question whether acceptance can go too far, morphing from a positive zest for life into losing all expectations of ever getting well. And once you lose the expectations of getting well, hopelessness and despair are following not far behind. I’ve just finished a book called “You are the placebo: Making your mind matter” by Joe Dispenza (blog post on that coming up). It’s all about being your own placebo effect through the power of your mind. I know, it sounds like absolute hocus pocus, but the science behind it is fascinating and I’m totally hooked on the idea. Alongside that, I’ve recently had a few sessions with a friend who uses hypnotherapy and psychoneuroimmunology (PNI) with people with chronic illness.

PNI focuses on how the nervous system and immune system interact, thus creating links between mind and health. It utilises simple techniques like meditation, positive mental imagery and hypnosis to focus the brain on ‘wellness’. You remember what it was like when you were well, you picture what it will be like to be well again, and then imagine you already ARE well. PNI has been shown to be effective for a whole host of illnesses from psychosis to hypothyroidism, but it is particularly successful in infectious diseases, which is of huge interest to me given my Lyme disease diagnosis.

And this got me wondering. In order to use the principles of PNI, to convince my brain that I can and will get well, does this not require me to no longer accept my illness? I recently read this fab post from fellow blogger One Mountain at a Time: Why I won’t accept my illness, but I’ll accept the battle. She explains that the dictionary definition of acceptance is “to receive willingly” and “to endure without protest or reaction”, and therefore makes the case that she will not accept her illness, because that would mean no longer fighting it. This really struck a cord with me. For all these years I have been trying to accept my illness because I thought it was the best way to cope. But now, I am not so sure.

Since finding out that I have Lyme disease, I have been filled with a huge fire in my belly. I have a new drive to improve my quality of life, to get well. I do not accept that I will always be a sick person. I do not accept that this is the life I am destined to live. I am absolutely determined that one day I will look back on today and say “wow, remember how sick I was back then?”

But can we both accept the limitations of where we are today, while still being determined to make change for tomorrow? Or is it time to let go of acceptance?

The art of self-acceptance

When you are living in hope of a different life, you are wasting the one you already have.

The last couple of months have been quite bad for me health-wise. I’ve cut right back on my hobbies and social activities because getting through a day at work is, most of the time, all I can manage. This has meant a huge cut in the amount of time I’ve spent with my friends.

For some reason, socialising is particularly exhausting when I’m unwell. All activities are exhausting to some extent, and pacing is a concept I am finally trying to increasingly bring into my life. I have always been very resistant to the idea of pacing – I don’t WANT to rest, I shouldn’t HAVE to rest, it’s not fair blah blah blah woe is me. But recently I have begun to accept that this is my life. Whether or not it’ll be my life forever, I really don’t know. I sure hope not, but right now this is what I’m dealing with and being able to pace, knowing when to stop and learning where my boundary lies on a particular day, is something I believe will be really important if I want to maintain a reasonable quality of life.

But for reasons I’m not quite sure of, social contact is one of the activities I have to be extra careful with. As a fairly introverted person I think part of it is just that it’s in my nature to find social situations quite tiring. But there definitely seems to be some relationship to chronic illness, and I’ve interestingly read some other blogs that have said similar things. Social interaction is just exhausting when you’re battling poor health.

An extra challenge arises when your health is unpredictable, because social events require plans, and sticking to plans can prove to be very tricky if you don’t know how you’re going to be feeling on any given day. There is nothing much that makes me feel worse than having to cancel on a friend because I’m too sick. Not only do I have the usual disappointment for myself not being able to do something I was looking forward to, but there’s the added guilt of having let your friend down last-minute.

So, much to my sadness, meeting up with friends has taken a bit of a back seat recently. Today I drove past a restaurant where me and one of my close friends like to go, and it made me think of her. She had a very important interview recently and I wasn’t able to offer her help in preparing for it as I had hoped, as I wasn’t very well. I was suddenly hit with a huge wave of guilt that I have really not been much of a friend to her recently. So I sent her a message to say I’m sorry I’ve not been much fun lately. And this was her reply:

“You don’t have to be fun….ever”

Those few small words meant so much to me that I can’t even begin to express it in words. Because, those words imply one thing – acceptance. My friend is accepting me exactly as I am right now. Not as the version of me I wish I could be more often. Not as the healthy me. Not as the fun me, the drunk me, the let’s-go-on-an-adventure me, the I-can-help-you-with-your-interview me. Just me.

I am very fortunate to have a handful of people who show me complete acceptance. My family are wonderful, never expecting anything from me, but giving me infinite love and support. Likewise, my boyfriend has shown me that it’s ok to rest, to take care of myself, even if that means sacrificing fun plans we have made together. And I have several friends who, despite all the times I’ve had to cancel my arrangements with them, have never responded with anything other than “get well soon”.

Self-acceptance is hard for us all at times, but it is especially hard when you crave a life that you cannot live. I long for good health, for my illness to be taken away and to be able to live a life without it. But I think it’s fair to say that for the forseeable future that probably isn’t going to happen. Life is now more about managing it than curing it, and with that comes a longing for all the things I feel I am losing or have already lost. It is a fine balance between acceptance and giving up. I don’t want to give up on the notion that I may achieve good health again one day. But I also don’t want to spend much more of my life wishing for things to be different, because when you are living in hope of a different life, you are wasting the one you already have.

Accepting a situation that you are unhappy with is not easy. Accepting a version of yourself that you wouldn’t choose to be, is not easy. But having total acceptance from the people you care about is one giant step towards self-acceptance.