Month: Feb 2022

Chronic Illness · Mental Health · Symptoms

Mental Health and Chronic Illness – Part 2 – Yourself, Uncertainties and Managing Symptoms

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TW – This post talks about mental health struggles surrounding chronic illness, which includes feelings of self-hate. Please click off this post if this is something not suitable for you at this time and check out one of my many other posts.

Here we are on part 2 of my mental health and chronic illness post. In the first post we covered the mental health issue surrounding other people which you can read here, so let us move on to the next point…

Mental health and chronic illness with regards to yourself

The next hurdle in the mental health battle of chronic illness is the opinion chronically ill people hold of themselves. When I first became ill, I hated myself. I hated myself for allowing my body to let me down, for being so weak and not being able to get on with things like everyone else around me could. All I could see was how much my life had changed, and how much I didn’t want it to. So, I pressed on and struggled, falling multiple times mentally in the process because I didn’t want this chronic illness life to my truth.

The thing is what people don’t understand with chronic illness is the notion that you are grieving. You are grieving for a life that can no longer be lived in the way you had hoped, you are essentially saying goodbye to a part of you that you can never get back – not if you want to stay as well as you possibly can anyway.

Grieving as a result of chronic illness varies from person to person, with some people never experiencing this process, but for me personally it was a process that took several years. Most of this time was spent in the denial, anger and bargaining stages – wow didn’t I spend a long time in denial! I couldn’t and wouldn’t accept this was going to be my life going forward. Instead I adopted the mentality that if I could push for answers and force myself to continue as normal (like a lot of health professionals suggest), I could push through the worst and find this miracle cure we are all seeking. This wasn’t the case and as a result I actually made myself worse.

Nevertheless, slowly but surely I found my way to acceptance and when I did the mental health relief I felt was immense. There was light at the end of the tunnel, even if indeed no cure. With acceptance I stopped the hate I felt about myself and recognised just how strong I was to be living with multiple chronic illnesses every day. With the subsidence of hate came the lifting of the blame. It wasn’t my fault the hand I had been dealt, but it was ok to feel sad, to have days where I cried and struggled, it didn’t make me weak – it just made me human.

Of course acceptance has it draws back, as with anything in life because with acceptance comes the fear you are giving up. To accept I am ill felt like I was saying I admit there is no miracle waiting for me, and for some this indicates that the fight is over, the flag has been waved. Even in my most recent times of acceptance I have felt this way, if I am not fighting for my health then what I am I fighting for? Chronic Illness has stolen so much from my life, my ability to work, have a family, a relationship, to socialise, to accept this does it mean I am waving goodbye to ever having those things?

I think not, instead I think I accept these things won’t be easy and that they will probably look very different to those around me with those things. I can still fight for my health, but through awareness and advocacy and trying to help others in the same boat.

Photo by Vie Studio on Pexels.com

Mental health and chronic illness with regards to uncertainties and missing out

The mental health impact of not being able to work, have an independent life, and live like anyone else my age is a very real worry, and although I have accepted I am ill it doesn’t actually stop the anxiety of missing out on life.

In life we are conditioned rightly or wrongly to believe our road to happiness is on one particular path. School, education, good job, partner, marriage, home, children – in some kind of order is something the majority of people aim for. Chronic illness makes all of these things difficult. Endless symptoms stop you from working (or at least working full time), this impacts your finances and therefore your ability to move out of your family home. It can also impact your ability to socialise and therefore meet new people putting the brakes on potential relationships and marriage and children. Of course, this is not the case for everyone and there is no clear cut way of living life – not everyone needs to be in a relationship to be a parent for example – but chronic illness is a hinderance to almost all scenarios rather than a help. Being chronically ill doesn’t magic away those natural desires for experiences in life, so how do you combat the anxiety of not having those things?

The truth is the anxiety doesn’t just disappear, it is about viewing it in a slightly different way. It is about making changes to those areas of life and experiencing them differently to how I had planned in order to compensate my physical illnesses, but to feel I am still achieving.

Mental health and chronic illness with regards to managing symptoms

The final hurdle I am going to tackle is the mental health effect of dealing with physical symptoms on a daily basis. Feeling ill most days if not all is draining. It takes it out of you each and every day and it can be hard to keep getting back up from another hit physically.

On top of this the majority of advice you are given is predominantly self-management of all physical symptoms in the form of pacing and diet to name a few, but how do you self-manage the mental health implications?

Nobody tells you the effect physical symptoms can bring psychologically, and how the relentlessness can be a tiring cycle of sleep, eat, be ill, repeat. We are left to our own devices, our own interpretations of what coping is. Nobody can predict how they will react, but I can assure you telling people to look on the bright side, or that things could be worse is probably not the answer.

In conclusion

With all these mental health challenges said and done, I can say on a personal level chronic illness has shown me I have a strength I never knew possible, but this didn’t happen overnight. It has made me more resilient, more understanding to the needs of others and has shaped me as a person. On my good days it makes me appreciate the smaller things in life because they matter so much more now. On my bad, maybe not so much, but I always try to think of tomorrow as a chance to try again.

I will probably always struggle with mental health in relation to chronic illness, but that’s ok – it’s hard not to. My hope is simply that the conversation is ignited more, and that there is an understanding of the mental struggles as well as the physical. That people know they are not alone in how they are feeling at times.

I hope this post wasn’t too long for anyone – and a massive thank you if you made it to the end. As always feel free to leave a comment, and if you fancy you can follow me to keep up to date with any new posts.

Sarah xx

Chronic Illness · Gaslighting · Invisible Illness · Mental Health

Mental Health and Chronic Illness – Part 1 – Other People

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TW – Please be aware this blog post talks about mental health issues surrounding chronic illness including medical gaslighting and negative opinion from others. If this is something that may be difficult for you at this time, please click off and check out some of my other posts instead.

Today I thought I would talk about a topic very close to my heart: Mental health in relation to chronic illness. Personally, I have found one of the hardest parts of living with chronic illness aside from the symptoms they create, is the mental health implications of persistent, never-ending illness.

When I thought about the various mental health challenges associated with chronic illness I realised there were quite a few. The best I can categorise them is as follows:

  • Other people
  • Yourself
  • The uncertainties/missing out
  • Managing symptoms

I am going to go into each category in more detail over 2-3 blog posts. A – because if you are anything like me reading long posts can be difficult, and B – I want to give myself a little break in-between. With this in mind, let me start with the first category…

Mental Health and Chronic Illness with regards to other people

One of the biggest challenges with mental health and chronic illness is the opinion of others. Many people may say why does this matter? You know your own self to know if you are ill or not, but the reality is it does matter. It matters because being believed is one of the biggest stumbling blocks when it comes to invisible illness. Most chronic illnesses don’t project an image of a sick person; in fact most chronically ill people look completely healthy, like any other person you may encounter on a day to day basis. Unfortunately there is no big neon light above our heads saying ‘Chronic Illness Person Here’ to make it easier for others to identify. It is hard for someone who doesn’t experience illness to get to grips with this concept at times, but also understandable, I mean can you completely resonate with something you have never experienced yourself? Whilst this is annoying, the kick to the gut is no doubt the dismissive behaviour of medical professionals and those who are trained to know better.

Medical gaslighting of chronic illnesses has probably been a thing for who knows how many years, that notion of a stiff upper lip and getting on with it runs rife especially in places like here in the UK. The problem being chronic illness is not something that is going to just disappear and go away, and actually the more you ignore it the worse it can get. The mental health destruction of having a qualified medical professional tell you over and over again that there is nothing wrong with you, is something I can truly say never leaves you. The fact this person or persons who have all these qualifications in medical science is telling you essentially what you believe is all in your head can only lead to one conclusion – it is all in your head. You illnesses and symptoms are something you are manifesting yourself and you are so mentally ill you are able to convince yourself you are having physical symptoms was a notion which led me to question my own state of mind. They were the professionals not me, and when you have someone tell you on a loop you are wrong you only have one option but to believe it, and as a result I couldn’t trust my own actions anymore. Even after it was discovered I was ill, no apology was ever made to me because it didn’t matter to them – I didn’t matter to them.

The problem with not having a medical professional backing your concerns not only impacts your thoughts on your own mental health, but the thoughts of those around you too. The people who love you start to doubt your stability because a medical person must know your body more than you do, and therefore they also start treating you like a mental health problem. The difficult part being even after you are diagnosed the stigma of those dismissed years of illness stay in people’s minds no matter how hard they try to convince you otherwise. The eye rolls, the exchanged glances, the declarations of ‘what’s wrong now’ for a long time filled me with shame. Like I was a thorn in so many people’s sides.

Photo by Vie Studio on Pexels.com

If this wasn’t enough you have the people in the street who you vaguely know, stop you and ask why you are not working, or why you aren’t more social. Who make their little remarks as they look you up and down, judging. You paint a smile on your face because you don’t know how to react whilst all the while dealing with the little voices in your head telling you they don’t believe you. It shouldn’t matter, but it does because you want people to see the real you and not the version they think you are selling.

One of the saddest things about public opinion on chronic illness is a lot of the time people don’t believe it whether you are diagnosed or not. Or maybe to be blunter they don’t care. There has probably never been a time when this has been reflected more than in the current times with the pandemic. Living somewhere where the lives of the vulnerable has been so disposable has been heart-breaking to say the least, but more than that it has been mentally traumatic knowing there are people who don’t value your life as much as your ‘healthier’ peers. The mental health implications of vulnerable communities has the potential to run on for years as people feel neglected and less valued in society.

So, is there an answer to this particular mental health challenge?

I would say yes, but not one that will happen overnight. It takes kindness and patience with yourself and it takes understanding and education of others. To move forward in society the reality of chronic illness needs to be talked about, and honest conversations need to be had. Chronic illness needs to be normalised and represented more across main stream media to demonstrate how anyone can become ill regardless of age, race, sex and background. Most of all we need to stop treating invisible illnesses like a dirty little secret to be ashamed of, on the contrary we need to make the invisible visible through our communications and words.

Medical professionals need to be trained in understanding the impact their dismissive behaviour can have not only on a patient’s physical, but mental health too. Chronic illnesses diagnoses need to be viewed as important as other diagnoses and support needs to come in the form of helping patients find their new path in life and helping them to combat the emotions they will inevitably face.

Here we have it challenge one – complete! I hope this wasn’t too long a post (I am basing this purely on my own experiences), either way I will tackle the next challenges in my future post. To keep up to date with my upcoming posts make sure you follow me 😊.

As always if you have any comments to share – I would love to hear from you.

Sarah xx