The Support (pt. 2)

In my most recent blog, I covered the various options available with regards to physical and financial aids for living with chronic pain. In this post, I will be taking a slightly deeper approach by discussing emotional support and the importance of a solid support network.  

A support network refers to the people you have in your life who help you achieve your goals. It is extremely beneficial in general day to day life by alleviating stress, improving coping mechanisms and aiding decision making. This is even more applicable if you are going through some form of struggle. When it comes to the people you surround yourself with, similarly to most things in life, it is better to focus considerably less on quantity and far more on quality. These should be people you love (and like!), trust and respect, and who you can rely on. Who do you have in your corner? Take a moment to think about it and truly appreciate who you have. This could be in relation to family, friends, a partner, colleagues, a local community or even a health professional.

It is so important to surround yourself with people who make you feel comfortable enough to be yourself. Every single time you put on a fake smile (trust me, I’ve been there) and lie that you feel fine and everything is OK, you are suppressing your true feelings. This was my default response in the past. It left me feeling disconnected from myself, emotionally numb, and lacking enthusiasm. I don’t think people truly appreciate how exhausting it is to put on a mask every time somebody asks how you are feeling, unless they have been through it themselves. Of course, you’re not going to unravel and rant to every single person you encounter who asks how you’re doing. Nobody wants to be the person known for unsolicited trauma dumping. However, it is essential to have someone in your life who can provide a safe space.  

Support in the form of your peers is something that can be pretty rare when you are young and living with a chronic health condition. Teenagers aren’t the most forgiving bunch (polite attempt at saying they are little shits), and so understandably, they are not going to be incredibly empathetic or supportive. This doesn’t necessarily get easier as you become older, either. You could have the most supportive friends and family the world, but the level of empathy is limited when you’re speaking to people about something they haven’t endured themselves. I have found it extremely valuable and encouraging to talk to individuals who have either gone through, or are currently going through, a similar experience.

One of my closest friends was previously diagnosed with ankylosing spondylitis: a type of arthritis which affects the spine and can result in severe widespread pain. Of course, I hate that he has to live with this debilitating condition. However, we have frequently expressed how grateful we are to have had each other to turn to over the years. I generally don’t like to wallow, but having a bit of a rant with someone who truly understands what you’re going through is a necessary means of catharsis from time to time. We don’t allow the other to wallow in misery for too long, and we pick each other up to avoid any spiralling. Although the diagnoses aren’t the same, many of the struggles are, and having that deeper level of empathy and understanding with somebody has been invaluable.

Sadly, a lot of people are not fortunate enough to have somebody like this to turn to in their life. It certainly wasn’t always the case for me. If you have read my post titled “The Struggles”, you'll be aware that not everybody I have encountered has been so understanding. However, I had to learn that it was not my responsibility to make somebody understand something that they simply did not want to.

There will be people in your life who are there solely as a matter of convenience and/or proximity. They will happily be present for all of the fun times, but disappear as soon as there is a slight inconvenience. If you are going through something similar and have noticed any red flags, or if you are ever made to feel like a burden: run. I can promise you that you will be happier once you drop the dead weight. Life is far too short to be wasting your time and energy on people who do not have your best interest at heart.

The next time you are in somebody's company, check in with yourself afterwards. How do you feel? Drained and withdrawn, or content and grateful? Asking yourself this is a pretty good indicator to determine whether a relationship is adding stress or value to your life. If the former is a recurring theme each time you are with them, it's maybe worth re-evaluating the relationship or creating some distance from them. Of course, it is not so straightforward when this is a family member. So for this scenario, open and honest communication, along with creating healthy boundaries, are key. For me, this was the best thing I could have done. My body was under enough stress battling intense pain every day, without unnecessarily adding to that stress from people who were supposed to care about me. No relationship is perfect, but you need to weigh up whether this is mainly helping or harming you.  

In addition to choosing your friendship circle wisely, I believe one of the most important decisions you can make is who to form a romantic relationship with. Your partner will ultimately be the person there night and day, through the good and bad. If this is someone who lacks patience or kindness, or who doesn’t handle stressful situations well, then this has potential to create huge challenges.  

I was fortunate to be in a relationship for a large chunk of my adult life with somebody who could handle the difficulties that came with my condition very well. He knew when I could be doing with an extra push, when I needed to rest, and when I needed a distraction to help me climb a flight of stairs. He didn’t sign up to essentially being a carer for most of his twenties, but he still never saw me as my illness. I believe this is crucial. There were many issues which led to the inevitable breakdown of that relationship, and he could act like an asshole at times (yes, I know you will be reading this). However, credit where credit's due: he was excellent when it came to supporting me with my condition. Despite that, I am certain that the separation is what kick-started my own accountability regarding my recovery, so for that, I am extremely grateful.  

Something I have considered recently is the lack of support groups available for the younger generation who are living with chronic pain. I once attended an in-person support group for people with fibromyalgia which was held at a local community centre. My issue with this, as a 19 year old female at the time, was that I brought down the average age of the group quite considerably. Don’t get me wrong, I think it is an incredible idea and has the potential to help a lot of people. However, because everybody else in the group was significantly older than me, I found it extremely difficult to relate to them. We were at completely different stages of our lives, and so of course our values and priorities differed vastly. I walked into the meeting with an open mind, full of hope that I would finally find a group of people I could relate to. However, I ended up leaving, feeling disheartened and more alone than ever.  

It is difficult to navigate the idea of a new support group specifically targeted at young adults, as exclusion is not something I would ever want to condone. Nevertheless, I do believe that something of this nature could be really beneficial for people who need it. So, stay tuned for updates regarding this.  

Thus far, I have discussed the importance of a support network with regards to friends, family and relationships. However, arguably, the biggest support needs to come from yourself. With the risk of sounding unbearably cheesy and vomit-provoking, you need to trust yourself and be your own biggest supporter.

If you find yourself constantly in a negative mindset; victimising yourself and looking outwardly at others in a bitter light, then guess what? The feelings and sensations within your body are going to reflect this. The words and tone you use when speaking to yourself are extremely important. This also applies when using language surrounding your health condition. You are not your illness. Your diagnosis does not define you. I think as soon as you start using language that defines you as this illness, that it likely becomes more and more difficult to recover from it. I believe you should treat it as a separate entity, although this does not mean to live in denial of it.

Some people may look at you struggling, and all they see is some poor little soul hobbling along with their walking sticks, but you are so much more than that. If somebody had told me 4-5 years ago that I would be where I am now, I would have laughed in disbelief. Knowing what I know now, I realise that you just need to back yourself.  

The thought of change is scary, I completely understand that. Moving your body when you’re in a lot of pain and pushing it to its limits is scary. But let me ask: what is scarier? Continuing with life the way it currently is, or putting in the work and making those consistent changes?  

I am by no means going to sugar coat it. Going through the process of recovery and rehabilitation is bloody difficult. Even the thought of exercising when you're in excruciating pain is hard. Preparing and cooking healthy meals (when all you want is a chippy delivered to your doorstep) is hard. Researching and educating yourself is hard. Do you know what I found more difficult? Having to explain to my 4 year old niece that I couldn’t play with her, watching the disappointed expression appear on her face. Having to watch your friends go out and have fun while you’re stuck in the house? Also difficult.  

Nothing worth having in life is easy, but you can choose your hard.  

Thanks for reading :)

Much love, Kirsten xox