The Struggles

It is extremely easy for living in pain to take its toll on you, both mentally and emotionally. You can end up feeling helpless, alone and misunderstood. I’ll be the first to admit I was very unhappy with a lot of aspects in my life and let’s face it, a bit of a dickhead at times. When you feel like your body is failing you, and you miss out on a lot of what your late teens/ early 20s should typically look like, it’s difficult not to feel hard done by.  

It usually isn’t until you take a step back from a situation that you can recognise your own behaviours. I was more often than not extremely uptight and handled stressful situations very poorly. I now realise that this was due to my body being under so much physical stress that I was already reaching my threshold just from day to day life. This led to me sometimes snapping at loved ones simply because they were in close proximity to me (something I’m sure we have all been guilty of doing at some point).  

I was also a bit of a control freak and struggled to adapt when things didn’t go to plan. It was honestly quite ridiculous how much I would try to plan things. I’d have a plan for a plan, and there was an Excel spreadsheet for almost every situation imaginable. It took me a while before discovering that I tried so hard to have control over external things because I felt so out of control with regards to my pain (i.e. unexplainable and unpredictable flare ups).

The physical struggles are somewhat obvious, but account for only the tip of the iceberg. Simple tasks in daily life such as cooking, cleaning, driving and washing would on some days feel impossible. When I managed to change bedding on my own and without pausing for a break, this felt like a monumental feat. It really does take a lot to ask for assistance with things that people normally wouldn’t give a second thought to. You lose your independence and can quite easily convince yourself that you are a burden to others.  

As tormented as I would sometimes become with these thoughts, I always tried to sidestep these feelings or simply brush them off. In order to avoid wallowing in my own misery, I frequently told myself: “there are people so much worse than you, you're not that bad, just get on with it”. Although the start of that was technically true, I didn't realise at the time how problematic this was. I was adamant back then that these kind of thoughts were ‘positive thinking' and this is what sparked the start of my recovery. I do believe it stopped me from heading in a downward spiral, but I wasn’t aware that this was actually toxic positivity.  

I remember a health professional once asking me, “but what happens when positive thinking isn’t enough?” and it hit hard. I initially became quite defensive, adamant that this was what had lifted me out of a rut and gotten me so far. But my progress had plateaued because I didn't have the correct mindset. I wasn’t validating my own symptoms and feelings, so how could I even begin to manage them?  

Only recently while doing some reflection, did I realise that I was likely invalidating my own feelings and pain because it was regularly rejected by others as I was growing up. This was by ‘friends’, family members and even initially doctors. I was frequently dismissed as being dramatic or a hypochondriac, simply because I 'looked' healthy.

This was an ongoing challenge: appearing young and healthy on the surface, but having the body of an arthritic 97 year old. It resulted in an abundance of staring from people – mainly in the office while I was hobbling around with my walking sticks. Please consciously make the effort not to stare at someone who seems to be struggling, even if you are staring out of concern. Nobody in this situation wants to draw attention to themselves. Other times, the staring would come from strangers who would glare at me accusingly as I parked in a disabled bay, only to promptly turn and walk away when they witnessed me struggle to get out of my car.

Most people didn’t understand, nor would they try to. This misunderstanding and confusion often led to judgement; something I struggled enormously with over the years. For whatever reason, I always felt some sort of obligation to explain myself.  

I can remember one summer when I was 20 years old, my mum was throwing a party in the back garden. I had been experiencing a few ‘good' days (i.e. was able to walk without wanting to cry) and my nephew was playing with a football on the grass. I hated missing out on spending time with my nieces and nephew, and I felt well enough (albeit after a few beers) at the time to join in. After passing the football around for a few minutes, my mum rushed over to me appearing visibly stressed. I can’t remember her exact words, but she was worried that me enjoying myself for a couple of minutes would cause great confusion among her friends. I recall the phrase: “well, how do you think that looks?" As if it appeared to others that I was fabricating or exaggerating my illness. I know my mum obviously never believed this as she was always extremely supportive, but she was concerned that others may think this.

To clarify: you are absolutely allowed to enjoy yourself. Just because someone has a debilitating illness does not mean they are confined to misery and the restrictions of a wheelchair for the rest of their life. I've come across a ridiculous ‘meme’ doing the rounds on social media over the years which infuriates me every time I see it. The graphic shows a woman in a wheelchair inside a supermarket who stands up to reach for a bottle of alcohol on the top shelf. The caption is along the lines of there being some miracle in the alcohol aisle. This may appear humorous and light-hearted on the surface, but I could probably guarantee it came from a place of hostility. The comments sections are always dripping with ignorance and are absolutely intolerable.

I cannot understand why a person would ever feel the need to make such a negative remark on someone living innocuously. These are situations that they know absolutely nothing about, yet they deem it necessary to share their toxicity with anyone who will listen. If somebody is feeling well enough to do something even remotely ‘normal’, these moments should be encouraged and celebrated; not suppressed and judged.  

This is a huge challenge that comes with living in pain. It is extremely unlikely that people, even your closest friends and family, will fully understand. The truth is that you can’t ever expect them to. In life, I think you need to almost expect to be misunderstood, and accept it.  

On the flip side, you may come across people who will appear to be your friend, but actually (directly or indirectly) make you feel terrible about yourself. Drop the dead weight; these people are not your real friends.  

Of course, all of this comes from experience, and two stories spring to mind when I think about this. The first was one evening at a friend’s house in 2015 when I was looking for assistance in deciding on which university to attend. I asked two of my friends for their opinions on universities in Glasgow and Edinburgh when the topic of commuting was brought up. They were discussing how expensive it is for parking if you travel by car. I quietly explained that because I held a blue badge, I didn’t need to pay for parking, so that issue wouldn’t apply to me. It was at this point, another girl (who was supposed to be my best friend at the time) abruptly turned round and exclaimed, very loudly and in front of everyone, “what!? How is that fair!?!" My eyes glared and I uncomfortably shrugged it off, but I was honestly too shocked to articulate a deserving response. Yes, you’re absolutely spot on. It’s perfectly fair that I am living in excruciating pain every day. But the fact that I get free parking makes every debilitating second all worth it.  :):):)

The other story was undoubtedly worse, and also relates to having a disability badge for my car. This now makes me wonder: did the hostility stem from the jealousy of free, nearby parking? If so, how ludicrous is that!?

I was in the process of my blue badge application being approved, so my workplace at the time (Prudential) granted me their own permit for using the disabled parking bays beside the main building. There was a girl in my friendship group at that point, who I also happened to work beside, who would always try to make herself seem funny at the expense of other people. A hideous trait, and something I was usually on the receiving end of.

One lunch time, I opened my phone to a notification on Instagram that I had been tagged in a photo by this person. The image that appeared was a photograph of my car. It's maybe important to note this was 8/9 years ago, before Instagram stories existed and when everyone posted everything straight on the grid. The initial confusion quickly faded when I saw the caption: “since when were you in a wheelchair?!" My heart sank and tears started spilling onto my cheeks. To this day, I still have no idea what her intentions were behind posting that, other than to try and humiliate me. What she didn’t know was that I had just been told that in 3-5 years I'd likely be in a wheelchair, so a comment like that hit me like a tonne of bricks.  

If you are ever made to feel like this by somebody who is supposed to care about you, don’t be afraid to call them out on it. Ask them why they would make such a comment, and explain how it makes you feel. If, after having this conversation, the behaviour continues, do yourself a favour and cut them off. Life can be difficult enough; you absolutely do not need people like this in your life making it worse.  

When I was at a particularly low point mentally, I recall feeling a sense of abandonment and asked “why are there no doctors helping me or checking up on me?” This came shortly after the residential pain management course I attended in Bath. It felt like doctors believed that because I had finished this programme, there was nothing else anyone could do for me. I was still feeling extremely reliant on healthcare professionals to ‘fix’ me.  

I wish I could tell you what happened in the precise moment things changed. It's unlikely I simply listened to a motivational podcast; maybe one day I got angry and fed up. However, I soon realised that nobody was coming to save me. I needed to take matters into my own hands in order to improve my quality of life. I recently heard wise words from a friend who said “the world doesn’t owe you anything” and I wish I had heard this sooner. It's spot on and I could not agree more (thank you, Bryce).

For anyone reading this who suffers from a chronic health condition, it is imperative to take action in improving your own wellbeing. I cannot stress this enough. For years, I had a passive role in my recovery, hence why I never saw any real improvements for so long. I was relying on others for improving my health, whilst doing the bare minimum myself.

Take an active role; the human body is a lot more resilient than we often give it credit for. The first step, I believe, is to develop some self awareness. Be honest with yourself and hold yourself accountable. Whether physical or emotional, your feelings are valid. Acknowledge them so that you have the ability to start working through them.  

As stated earlier, nobody is coming to save you. You need to save yourself.  

Thanks for reading :)

Much love, Kirsten xox